I have three daughters, and my oldest one, we’ll call her Catherine, was diagnosed with autism spectrum disorder many years ago. This is our story, one that has little to do with vaccines, except that I never once thought that there was a relationship between her autism and vaccines. Not once.
I have rarely mentioned Catherine online not because I was ashamed of her autism – she deserved her privacy, and I did not want to be someone who used my personal life story as a “cause” for the science of vaccines.
Then, two things happened. First, while commenting on an article I wrote a few years ago, someone said: “you don’t understand autism because you do not have autistic children.” The former statement is false because it doesn’t take having an autistic child to understand autism. The latter statement is also false because I do have a child with autism.
Second, I finally read Peter Hotez’s book, Vaccines did not Cause Rachel’s Autism. For those of you who don’t know Dr. Hotez, he is one of the leading researchers in vaccines, and he has written hundreds of peer-reviewed papers on infectious diseases (and vaccines) along with numerous books on infectious diseases. He is a real authority on vaccines, public health, and vaccine-preventable diseases, and as they said on Wayne’s World, “we are not worthy!”
So, I was inspired to write my own story, because it’s important for me on this Father’s Day 2019. And because of my acceptance of the science that rejects a link between vaccines and autism is not just academic, it is personal.
This is our story.
My daughter and autism
Catherine was born in the late 1980s in a small city in the northeastern USA. For the first year and a half of her life, she seemed to progress, intellectually and emotionally, as most children do.
But there were little signs that appeared which at first her mother and I dismissed. Remember, this was the late 80s, and autism was not quickly diagnosed then as it is today.
Her mother’s best friend had an autistic son, so she was always on the lookout for it, but even she missed it.
But there were so many signs that today would have persuaded me to take her to a specialist. For example, she had an obsessive relationship with certain objects. Her “baby blanket” could not be but a few steps away from her before she would have an emotional breakdown. This blanket was in her backpack when she and I went on a little trip to the mountains when she was 16.
She couldn’t sleep in a bed that didn’t have a large number of pillows (around 20 or so) which would surround her at night. She lacked social skills so she couldn’t tell when someone was relating to what she was saying or doing.
Throughout her first few years of life, many aspects of her behavior and emotions were difficult to understand. Autism spectrum disorder (ASD) does not have a checklist of easy-to-notice symptoms, like the flu. Instead, it is a very subtle condition that, at the time, escaped our comprehension.
Never once did her mother or I consider her anything but wonderful. We just thought she was quirky. We didn’t think anything of the thousands of times we called her name, and she ignored us. Or when she wouldn’t look at us directly. Or anything.
Maybe we were delusional. Maybe we were in denial. But at the time, we really didn’t think anything.
Then her mother got her accepted to one of the top private schools in the midwestern city where we lived. It was selective and snobby, filled with upper-class white kids from the city.
It was there that the school determine that she had some “learning disabilities.” Of course, her mom, a top attorney for a huge corporation, and I, a highly educated corporate lackey, just argued with the school officials.
This expensive, privileged school also didn’t have the ability to assist Catherine in her schooling, so that asked us to withdraw her and put her into a public school which could assist her. To this day, I still loathe that school, and whenever I saw a resume land on my desk that had that school as part of the education, I tossed the resume into the recycling bin. Yes, people used to send resumes.
Our daughter went through a series of tests, tutors, and everything else to help her in school, but it wasn’t working. It’s not that she lacked the intelligence to succeed, but it was something else. She couldn’t connect to anyone but her parents.
When Catherine was around 5 or 6 years old, her mother took her to a child development researcher at one of the medical schools in our city. The researcher was an expert in autism and performed a battery of tests over several days. It was then that they determine that she was “autistic.”
As parents, we were actually a bit relieved – not because of the diagnosis, but because now we understood what was happening to our daughter. And that we knew how to adjust our lives and her life so that she had the maximum amount of support to do what she wants to do in her own life.
Today, she is in her 30s. She is a whiz at writing code for games. She can spit out HTML coding like an expert. She can speak fluent Korean, and she is a huge fan of K-pop. She even made sure I have a few of those songs on my iTunes playlist.
But, she still lives her mom, not because she has no money (well, like most millennials, she isn’t flush with cash), but because she just can’t live alone. She can’t balance a checkbook (though who does that anymore with online banking?) or tell time. She has very few friends, maybe two or three.
She attends a major university in her city, where she gets wonderful support from the school to maximize her chances
And that baby blanket? It’s now about a 2-3 cm square piece of cloth. Her mom, if I remember correctly, finally had it put into an acrylic block so that it wouldn’t disappear. And she still carries it in her backpack.
I have a painfully strained relationship with her today. Not because of her autism, but because I got remarried, had two more daughters, and I traveled obsessively and frequently on my job. I managed a department that had employees in four continents, and I was constantly on planes or in a hotel someplace other than home.
For her, I am nearly a stranger, which for someone who has autism means that to her, I am outside of her tiny sphere of comfort. And that is my fault.
But I never blamed vaccines
Never once did I think that vaccines cause Catherine’s ASD. Not one single time.
Of course, autism and vaccines weren’t a subject of conversation when she was born. It wasn’t until that cunning fraud, Mr. Andrew Wakefield, published his fraudulent and pathetically weak study attempting to link the MMR vaccine to autism.
Even back then, I remember reading the actual study in Lancet at the time. I couldn’t believe that a study that involved 12 children with no controls along with some dodgy methods could get published in such a respected journal. I was sitting in my office yelling at the paper wondering who would ever believe this nonsense. I made my boss, who was more snarky and cynical than I’d ever been, read it – he said, “this is the biggest load of bullshit I’ve read since I was born.” That’s how he talked.
As I mentioned, I subsequently had two more daughters, neither of them with ASD. They have both been fully vaccinated – including the very safe and very effective HPV vaccine.
However, my middle daughter’s first MMR vaccination coincided with the dramatic news reports that resulted from Wakefield’s lies about the MMR vaccine. Prior to the “well baby visit,” my wife and I had significant arguments about the vaccine. I eventually prevailed, but I’ll be honest, I had a tiny bit of doubt in my brain, especially with Catherine’s diagnosis.
And even today, if I could go back to when Catherine was just 6 months old, I would still give her all her vaccines. Because they have nothing to do with her autism.
There are at least a dozen hypotheses, some of them are biologically plausible, of what may “cause” ASD. Probably the most important one is that ASD is inherited from her parents. In other words, genes from me and/or her mother contributed to her autism.
I love Catherine with all of my heart. She sees the world differently than you or I, but that just gives her a unique perspective on life. She does miss social cues, but I’ve adjusted (though I frequently forget).
To me, she will always be my loving, bright, beautiful daughter. And she is fully vaccinated against diseases that can harm her.
I have been intentionally vague about the identity of my oldest daughter. This is for several reasons, including her own privacy and because anti-vaxxers can be cruel and hateful towards autistic individuals. Catherine does not have much of a social media presence, so it will be difficult for the anti-vaccine zealots to hunt her down and shame her publicly. Otherwise, I would have never written this article.