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.

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.

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.

 

Equine Therapy for autism?

I just signed kiddo up for an equine therapy program.  Since she’s only 2, she’ll start with a 30 minute class specifically for children ages 2-5 with disabilities.  If she sticks with it she can eventually move to a 60 minute class.  The horseback riding location is 15 minutes from her preschool and 20 minutes from home, so she’ll spend at least at much time in the car as she spends actually there, and more than she spends on the horse.  Luckily, Grandma has agreed to do the driving for this!

Last October, we took her to a pumpkin patch where she did a pony ride.  The pony merely walked slowly in a circle, but she was terrified.  She screamed the entire time.  That was more than 6 months ago, and since then, she has successfully pet mules without any issue (but hasn’t ridden anything).  I discussed this concern with the director of the equine therapy program, who told me that children are often terrified on their first or second time out, especially those with ASD because it’s such a new experience.  But typically by the third time they are enjoying themselves and opening up.

The whole idea seems a bit silly to me.  It feels like one of the quackery therapies for autism of which there are so many.  But intellectually I know that multiple studies have found a benefit from equine therapy for those with ASD.  (Here are links to two such studies: Study 1 Study 2).  So we’re going to give it a try.  Additionally, in our county we are eligible to receive some funding from a local government program that will pay for our equine therapy fees, making it completely free for us.

Has anyone in the wordpress world tried equine therapy, also called therapeutic horseback riding or hippotherapy for autism?  I would love to hear your experiences.

Autism therapy at home

My autistic daughter recently started her ABA (Applied Behavior Analysis) therapy.  Her therapy schedule is 1.5 hours/day at preschool and 1/5 hours/day at home, 5 days/week, for 15 hours of ABA.  She also has 1 hour of speech therapy at home, so a total of 16 hours, 8.5 of which occur at home in the evenings.  A typical evening looks like this:

4:45 Husband gets kiddo from preschool

5:00 kiddo gets home, we feed her

5:30 ABA implementer arrives.  ABA from 5:30-7:00.  Husband and I usually use this time to prepare and eat our own dinners, then participate in the therapy afterwards.

7:00-8:00 play with kiddo, possibly a bath in here.

8:00-8:30 getting ready for bed, bedtime for kiddo.

8:30 Husband and I collapse on the sofa.

It’s busy, to say the least, and leaves basically no time to keep our home clean. During the week we just try to keep the mess semi-contained, and then fix it over the weekend (this doesn’t always happen).  The weirdest part though is having the implementers and therapists constantly in our home while we are preparing and eating dinner.  We have the same implementer who comes every evening, and she’s great.  But she’s also an undergraduate at the same university where I am a professor, so that’s a bit awkward.  I did not imagine when I started as a professor that within a few months, I would have an undergraduate I didn’t know intimately involved in my family life.  I have never liked having new people in my home, and the whole thing makes my home feel less personal and more public.  Our implementer has always been completely professional and sweet with our daughter,  and the therapy is obviously working.  We are seeing tremendous progress.  So I have no doubt that this is the best thing for the kiddo, but it’s taking some getting used to for me.  Since our daughter just turned two, this will likely be our schedule for at least the next year until she turns three and becomes eligible for the local special education school for children on the autism spectrum, which will also provide her therapy.

 

The long road to getting help for Autism

The road to getting autism therapy for my daughter has been a long one, and it’s not quite over yet.  It started with trying to get a diagnosis.  The first time I took her to an autism diagnostic clinic, I first had to get an appointment with her pediatrician, convince him of my concerns, get a referral, and wait for an appointment.  Oh, and we had to agree to all give blood for genetic testing and enroll in a clinical trial in order to get the autism assessment.  After administering the ADOS-toddler module and a few other interviews and tests, this first clinic said our daughter did NOT have autism but rather had a global developmental delay for other, unknown reasons.

A few months later, we moved to a new state.  I wanted to get our daughter assessed again because new behaviors had appeared, and also to clarify what her diagnosis is and what might help, and to qualify for services.  This involved, again, getting a referral to the diagnostic clinic, filling out reams of paperwork, waiting for an appointment, and then actually going in for another 4.5 hour assessment.  That process took about 2 months, and we were told we were lucky it was that fast!  This time she was diagnosed with ASD, and the diagnostic team said it was a relatively clear-cut case and didn’t understand why the previous testing came back with the result it did.  It was another month before we got the full diagnostic report and had more to go on than just a diagnosis of ASD.  Total time from initial concerns to official diagnosis: 5 months.  And that’s because I worked pretty hard at making it happen.

In the meantime we were jumping through more hoops, including lots more paperwork, handing over our tax return, and another assessment to qualify for the state early intervention program.  Because the waitlists at the private autism clinic are very long, and because they only do in-clinic services (as opposed to in-home or in-school) we have decided to obtain services through the early intervention program.  After our initial entry process they began sending a speech therapist to our home 1 hour/week.  The therapist is great, and impressively, has been able to make noticeable progress with our daughter in only 1 hour/week.  But she clearly needs a lot more help.

The only autism-specific service provided by either the state program or the private clinic is ABA (applied behavior analysis) therapy.  I know this type of therapy is controversial, because some people think it’s trying to force people with autism to fake being people without autism.  There is definitely merit to that criticism, and ABA does look a little bit like training a dog (giving rewards for producing the desired behaviors).  But ABA is also the most well-studied autism therapy, with the most research showing that it makes a real, measurable difference in the life skills of those with autism.  ABA makes the biggest difference when you start before age 3 (our kiddo is about to turn 2) and can help with social skills, communication skills, and sensory issues.  To qualify to receive in-home and in-school ABA therapy sessions, our daughter had to complete yet another assessment.  We also had to have an officially scheduled meeting with the BCBA (lead ABA therapist) and our early intervention coordinator.  We are now officially green-lighted for 15 hours/week of therapy, but we’re still waiting to be put on the schedule and actually get started.  That will probably take another 2-3 weeks.  Total time between concerns and actually getting this therapy: about 9-10 months.  That’s a lot of time to lose when we’re talking about early intervention and the brains of developing children.

All of this shows how important it is for parents with developmental concerns about their children to seek help, advocate hard for their children, and get second opinions when something doesn’t seem right.  I’ve probably sunk at least 200 hours into getting this diagnosis and treatment services for her, as well as learning about her condition.  My husband and I are also doing a weekly “parent training” program to learn the ABA techniques ourselves.

Things they don’t tell you: Professor edition

My route into an academic career was fairly straightforward.  I got a bachelor’s degree (3.5 years).  I went to graduate school and got a PhD (5.25 years).  I did a postdoc (2 years).  Total years of post-high school training: 10.75.  And yet, almost all of that training focused on either learning new things, and/or performing research to discover new things.

It turns out of course that a professor’s job is a lot more than learning new things and doing research.  In fact, the large majority of a professor’s time is spent doing neither of these things.  So what are we doing?  The obvious answer is teaching, and during the academic year, teaching and preparing to teach does take up a lot of time.  Other duties include writing grant proposals to obtain research funds, advising graduate students, providing peer review services for journals and funding agencies, and lots of administrative and related duties (such as various types of committee service).  With the exception of a tiny amount of grant writing experience, and 2 quarters of TA experience (mainly grading), none of my training prepared me for all these job duties that actually comprise the majority of my job.  Certainly I have next to no training in managing all these competing duties.

Lots of people have written about how the transition into an assistant professorship is hard, and it is.  More than being difficult though, it’s bewildering.  I constantly have a million questions that people don’t realize I don’t know the answers to.  Like, how do I give my TA the ability to put grades into Blackboard?  How do I access the university’s online purchasing system?  What are the specific rules regarding how I can spend my start-up funds?  What’s a reasonable about of time to sacrifice to reviewing others’ work?  How do I use the department copier?  How do I order computers? How do I recruit decent graduate applicants?  What should I look for when reading graduate applications?  It’s not fun admitting ignorance about all things large and small to to all of your colleagues, so I have figured out a group of 3ish professors in the department I feel comfortable asking potentially stupid questions.  I try to rotate through them so that no one sees the complete scope of my ignorance or is annoyed with constant questions.  I’m probably overthinking this.

I recently got my first grant funded (woo hoo!).  While that’s great news, it gives me even more questions.  When and how will I get my grant money?  Will the money match what I asked for in my budget? What are the rules regarding reallocating funds from one line item to another?  What are the rules regarding when money must be spent by?

The main point I’m trying to make here is that if my experience is any guide, new professors are very confused people!  There is so much that was just taken care of for us when we were students and postdocs, but now we’re thrown head first into the machine that is a large university, and just trying to figure it all out.