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claimed a link appeared in the Lancet in the late 1990’s. It later turned out that the data was fabricated, the paper was retracted, and the lead author was stripped of his medical license.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.

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.

 

Autism and Medical Tests

I am a scientist, and I like data.  My attitude towards medical testing has generally been “tests, please!” as long as my insurance is paying for it, anyway.  I want as much information as possible, especially when it comes to my health.

I had an experience yesterday that made me question if this is the best approach.  When my daughter was diagnosed with Autism Spectrum Disorder, we were offered an array of of testing, including an EEG, a brain MRI, and blood tests.  The doc said we could get it all done in a few hours at the hospital, and the kiddo would be sedated through the whole thing.  Our insurance would cover it 100%.  So of course we said yes, because we wanted as much info as possible about what’s going on with out daughter.

Yesterday was our scheduled day of testing at the hospital, and it was traumatic to say the least.  First, she wasn’t allowed to eat or drink for many hours beforehand, which made me anxious because her growth has been poor so I hated not feeding her.  She didn’t seem to mind too much though.  When we got to the hospital, the first thing they tried to do was measure her blood pressure with an ankle cuff, and put a pulse and blood oxygen monitor on her fingers or toes.  All of this made her scream and thrash because she has severe sensory issues with people (especially strangers) touching her hands and feet.  In the end there was a lot of trauma all around and the nurses gave up without getting any of the measurements.

Then it was time for the sedation.  First we did a nasal spray that was quick and easy, and within 10 minutes she was asleep!  Victory!  …… Until the nurses tried to put the monitor on her foot and the EEG cap on her head.  Then we found out just how awake she could be despite the drug.  So they had to go to an IV sedative.  Having the IV placed was terrible.  Just completely awful.  It was a solid 10 minutes of screaming and struggling, and even after the sedative took effect, she was still sobbing lightly in her sleep state.

The EEG and MRI were normal.  Usually, this would be a cause for celebration and relief, but instead I feel like I put my daughter through a lot of trauma unnecessarily.  The good news is that according to the doctor, the sedative she was given means she shouldn’t remember the experience.  So perhaps it’s only me that is traumatized, but it still has me rethinking the idea of medical testing.  Unfortunately we just found out that her blood work shows anemia that is not iron deficiency caused, and so they will have to take more blood and do more tests.  More medical trauma to come.

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.