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.

 

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.

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.

 

Keeping it all going

No one expects that being a professor and a mom to an autistic toddler is easy.  It really isn’t, but not always in the ways people might expect.

Caring for the autistic kid is actually probably easier than most people think, at least in our case.  Our daughter is very high functioning, and other than some sensory related meltdowns, is a fairly happy kid.  She gets frustrated when she can’t communicate something she wants, but so does every toddler.  In fact, every weekday evening from 5:30-7:00 PM we have our ABA implementers around to help out.  Lately kiddo has wanted to do her ABA therapy in her basement playroom – which is wonderful.  She and the implementer stay down there and husband and I can make dinner and eat together in peace.  This is a recent development, it used to be that kiddo was constantly running away from therapy to me and demanding to be picked up.  So things on that front have gotten easier.

On the work front, it’s summer, so that means no teaching at the moment.  But stress levels are still very high.  As my mother keeps reminding me, I have a proposal deadline coming up. Seriously, when do parents stop nagging you about homework?  Apparently not when you become a professor, at least in my case.  Note to other profs: Do not tell your parents about impending proposal deadlines.  I don’t know why I ever did.

Of course I also have to prep my fall class, get a paper out, advise a student, and a few other things.  Oh, and I’ve recently had my own health scare that is most likely nothing, but has resulted in me having a TON of doctor’s appointments and tests.  Last week I had a cardiologist appointment, a kidney ultrasound, and a cardiac MRI, all of which showed me to be perfectly healthy.  But it’s an extra drain on my time and stress levels, and the docs want me to do more tests, ugh.

So with all this, it shouldn’t come as much of a surprise that some things slip through the cracks occasionally.  This week, I managed to annoy the front office staff of my department because I was supposed to sign a form by a specific date and I went to sign it the day after the deadline.  The deadline was pretty much the same day we got the forms because of the end of the fiscal year.  Apparently they were looking for me on Tuesday to get this signature, but I had some other stuff to take care of on Tuesday and wasn’t around.  So when I talked to them on Wednesday I got comments like “No one ever knows where you are, you’re not around.”  And other annoyed comments.  At first I was embarrassed but then I realized a few things: 1) I’m a professor.  I don’t work for or report to the office staff.  and 2) It’s summer, which means the university isn’t paying me for my time.  Many people may not know this, but professors actually aren’t paid for the summer months unless we find our own money through grants.  So I feel like they can’t really fault me for not being around for a day, after all, I’m still working for the university over the summer without pay from them.  (I did have 1 month of pay from a grant, but 2 months are completely unpaid for me).

Perhaps part of the problem is imposter syndrome, and I certainly have some of that.  It probably doesn’t help that I am female and younger than both of our front office employees, by a decent margin.  In fact I’m younger than some of the graduate students, which can make it a bit awkward if I try to exercise my professorial authority.  Also, I am someone who is very easily embarrassed and I suffer from a high level of anxiety, for which I take medication but it’s still a problem for me.  So for now, as silly as it is, I’m avoiding the front office completely.

 

Having a second kid after one with ASD?

Kiddo’s genetic test results are back.  A DNA microarray showed no copy number variation (CNV) abnormalities, meaning she does not have additions or deletions of large chunks of DNA in her genes.  The test for Fragile-X also came back negative.  However, there are other types of mutations, for example point mutations of a single nucleotide, that would be missed by these tests.  After all, the heritability of Autism Spectrum Disorder is known to be over 70%, whereas these genetic tests only show abnormalities in less than 20% of people with ASD.

These tests, along with the fact that kiddo is over 2 years old now, have me thinking about adding another child to our family.  We currently only have the one.  We always planned on at least two children, and with the ASD diagnosis, I think it’s particularly important that kiddo have a sibling for socialization reasons.  But, my concerns relating to having another child are twofold: (1) Will he/she have ASD? and (2) Where will we find the time?!

Regarding (1), it’s not that I particularly mind having another child with ASD.  I love our first kiddo to pieces, partly because she is different and has her own way of doing things.  But kids with ASD require extra support, and in particular extra time (so see discussion of (2) below).  Also, our first kiddo’s ASD is “high-functioning” and in fact it seems she may be really smart!  What if our second kid has low functioning ASD?  In that case the new sibling may not help in socializing the first kiddo, and may require even more support than she does.  Since the genetic tests kiddo #1 had turned up nothing, we have no information on what the odds of having another ASD kid are (except for the general statistic that says the sibling concordance rate for ASD is 20%).

Regarding (2), our lives are already packed full with very little free time (see my previous post about therapy at home).  And my professional life is only going to get more busy as I approach tenure.  It’s hard to imagine how a new baby would fit into the picture.  I find myself questioning whether a second kid is really a selfish thing to do, since the competing interests of both kids may mean both have some needs neglected.

Our vague plan is to wait another 2-3 years.  At that time kiddo #1 will be 4-5 years old and entering kindergarten.  Hopefully she will need less therapeutic supports by then, allowing us to focus more attention on a new baby.  The downsides of waiting are of course a larger age gap means they will socialize together less, and kiddo #1 may feel more jealous of the baby after being an only child for so long.

I would love some comments from other people about sibling dynamics in their families with ASD.  What worked?  What didn’t?  Were the parents spread too thin?

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.

Questions I hear alot

Since my daughter’s diagnosis, I’ve been meeting with a lot of different therapy, service, and healthcare providers.  I’ve also been meeting a lot of new people just by virtue of having recently moved to a new state.  Recently I’ve noticed that I tend to get the same two questions over and over, and I have mixed feeling about them.

The first, and most common question I am asked is “Do you work outside the home?”  This is always asked with pretty much that exact wording.  It seems strange to me because in the place we moved from (a major city in California) I was never once asked this question.  In the place we live now (a medium sized midwest town) I gather it is far more common for women to be stay-at-home moms; thus the question.  I have mixed feeling about this one, since it’s based in a realistic observation (many women in this area don’t work outside the home) but it’s still inherently sexist (my husband has never been asked this question).  My usual answer is “Yes, I am a professor at (University Name).”

That answer often elicits a surprised look, followed by the next most common question I am asked, namely, “Oh, what do you teach?”  Again, this question gives me mixed feelings.  Yes, I do teach 1 class at the moment.  But I am a tenure track professor at a research university, so I see my job as much more than teaching.  The accomplishments I am most proud of are my published papers and my recently funded research grant.  The question is based on the misconception that a professor’s sole job is to teach.  I’m not quite sure how to answer this one yet.  I usually just give the name of the class I teach, but in some contexts I have attempted to inform the asker of the other aspects of my job, if I thought they might be interested.  I can’t help but wonder though if the same assumption, that a professor’s job is just to teach, is applied to older white male professors.  I happen to be a young white female professor, and I suspect that may have something to do with it.

Getting a Diagnosis

I’ve been concerned about my daughter’s development since about the time she turned 1.  She wasn’t talking yet, not even “mama” or “dada.”  By 18 months old it was clear she had a substantial speech delay, and we started seeking early intervention services.  By 22 months old she still had no words, and was showing other strange behaviors, so I brought her to a special autism and developmental disorders diagnostic clinic.  She underwent about 4 hours of testing and evaluation, including the ADOS.  You’d think after all this I would be prepared for the diagnosis, but I wasn’t.

When the lead psychologist on the evaluation team came in and told me my daughter was being given an official diagnosis of Autism Spectrum Disorder, or ASD, I was initially calm.  Hey, I thought, this isn’t really a surprise and it explains her delays and behaviors, plus it means it’s not my fault!  But after a day or two, reality started to sink in.  My kid was going to need 20 or more hours of intensive therapy every week, just to have a 50% chance of being able to function normally.  My husband and I both work full time and love our jobs, plus if one of us quit we would need to give up the beautiful home we just bought 2 months ago (our first house!).  So how are we going to make this work?!

But what hit me the hardest was the loss of dreams.  No matter how much we know we shouldn’t, I think all parents dream about their children’s futures when they are babies and toddlers.  What they might be when they grow up, what their favorite subject in school will be, what sports they’ll be good at, how many friends they will have.  Both my husband and I had trouble making friends as kids and we were determined to make our home an awesome place for our daughter to invite friends over to play so that she would be well liked.  Both of us are also gifted and good at math, and we figured our daughter would be too.  Suddenly, all that went out the window.  Our daughter will need special education services and have social difficulties.  Our hopes and dreams now are on an entirely different level: we hope she will learn to talk.  We hope she will learn to use a toilet.  We hope she will complete high school and be able to get a job, any job.  We hope she will someday be able to live on her own.  Only time, and intensive therapies, will tell us how many of these hopes will come true.  The one thing I know for sure is I still love her just as much as always, and she’ll always be my daughter.