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

 

 

 

 

 

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?

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.

Stimming

Stimming is autism terminology for self-stimulatory behavior, or anything that autistic people do to stimulate the senses that they find soothing or enjoyable.

My daughter has a number of stimming behaviors that we see on a daily basis.  For example, she often spins in circles reciting the alphabet, or bounces up and down on her heels while counting.  When excited, she rocks back and forth rapidly.  When sitting down, it looks like she is energetically rowing an invisible boat.

My husband and I very much subscribe to the idea that stimming is not to be discouraged, but rather accepted as part of who our daughter is and even celebrated.  Stimming helps her calm down when she is bombarded with too much sensory input.  A common misconception about ABA therapy is that the therapists will punish or prevent stimming, but our experience has been that the therapists accept and wait out stimming behaviors.  Her therapy team is completely on board with our attitude.

The exception to the rule is when stimming becomes self-harming, which is unfortunately common.  In my daughter’s case, she used to bang her head against the wall when she was tired.  We did discourage that behavior and it has since naturally stopped.  In the past few weeks, a new behavior has emerged.  She now smacks herself in the face, usually in the forehead area.  She even leans into the hits.  I am torn about this, because she doesn’t seem to be causing any viable damage (skin looks normal) and I doubt she is hitting herself hard enough to cause any internal injury.  But if I allow this to continue, who knows what it might turn into, plus it’s just disturbing to see your child repeatedly hit themselves.  She also has a very high pain tolerance, seeming to not even notice falls and scrapes that would have other toddlers bawling, so I worry she may hurt herself and not notice.  I’m going to ask her doctor about this at her next appointment, but it’s a month away.

Kiddo also enjoys makes lines out her toys, like many autistic children.  I’m not sure if this counts as stimming but I’m including it here because she made some nice lines this weekend and I thought it was cute.  Notice how the boats have been given their own line, and all the airplanes are sorted out in a pile at the back.

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