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.

Things they don’t tell you: Autism edition

One of the hardest parts of being a parent of an autistic child is navigating the various systems in order to obtain care and therapies.  It is so confusing, it’s a wonder anyone gets anything done at all with autism intervention in the U.S.  For a long time, I’ve thought that a “single-payer” healthcare system, like the ones in Canada or the U.K. or Australia is just plain better than our system, and my experiences as a parent of a special needs kid have only solidified this opinion.

When we got the autism diagnosis, we got a bunch of reading materials like the first 100 days kit for Autism Speaks.  While that’s useful in understanding the diagnosis and general information about types of therapies, it’s not very useful in terms of practical information about how to obtain care and therapy.  That’s because this sort of practical information, while it’s arguably the most important thing you need, varies so much from family to family and location to location.  Still, we got the autism diagnosis at a local specialty center for autism and related disorders.  It would be logical then to give parents something that outlines all the local resources.

What I’d really like to see is a table of information, where each row is a service provider or agency, and the columns include things like: Contact information, services provided, cost, payments and insurance accepted, who they serve, whether there is a waitlist and how long it is, and what requirements need to be met in order to obtain services.  Here’s what a useful table might look like:

Name   Services Cost Payments and

Insurance

Who is served Waitlist? Requirements to

obtain services

State Early Intervention program   Coordinates and pays for therapies, including ABA, ST, OT.  Does not provide services directly. up to $100 monthly, depending on income Takes insurance and private payments Children under age 3 with an ASD diagnosis or with other developmental delays No, but it generally takes ~2 months to begin services obtain a referral (can self-refer), provide medical documentation, meet with service coordinator, possibly evaluations to qualify for services
Easter Seals   Provides in-home and/or in-school ABA and other therapies.  Provides parent training as well. varies Take insurance and accepts funding through various state sources including State Early Intervention program Anyone with a developmental disability, including adults usually no diagnosis of developmental delay or disorder
Autism Specialty Center   Provides evaluations, and various in clinic therapies and services.  Pediatric focused. varies part of University hospital system; takes insurance anyone with Autism or a related developmental disorder.  Pediatric focus. Yes, usually 1-12 months depending on specific service and age of child Must be referred by doctor or school professional.  Cannot self-refer.  Must fill out unbelievable amounts of paperwork before they will even schedule an appointment or put you on a waitlist.

The above example was written quickly by me and written to anonymize our location.  It also lists only 3 of the (so far) 5 service providers/organizations we have dealt with.  It would help me so much to have had something like this 3 weeks ago to answer questions like: OK, I want ABA therapy for my child, but who provides this therapy and where do they provide it?  How can I pay for it?

Yes, a table like this would have to be specific to each state or even each metro area.  But really, it’s not that hard to make, and having this information handy would greatly help overwhelmed families navigate this crazy American system that we have.  I’ve been spending about 10 hours per week for the last 3 weeks just trying to figure all this stuff out (which is a lot when you work full time already and have to care for the autistic toddler) and I still don’t have it all straight.