Susan's Blog

Thursday, February 26, 2009

Vax Populi

Here is a commentary I tried to get to NPR, WBUR, and several other of my favorite media outlets. It was not accepted, so I am posting it here because I like it. I am all about bridging the divide among parents in the autism community, which does so much harm to an already challenging life.

I don’t believe that vaccines caused my son’s autism. Actually it is the furthest thing from my mind these days. Maybe there was a time when Nat was little – he’s now 19 – when I was wringing my hands about how this happened, and why. And wondering what I could have done about it. But that was a long time ago.

I don’t know exactly what causes autism. But I do know something about what helps autistic people, my son in particular. I learned, for instance, that Nat uses giddy laughter to let me know that he wants to connect with me. I didn’t know that until he was thirteen. I also learned that Nat may talk a bit like a little boy, but that he understands everything that is said to him – and around him. I have learned that Nat can do just about anything he is taught, from working at Papa Gino’s to using the telephone, but that it takes a special kind of educational approach for him to succeed.

With autism’s challenges, it is easy to understand why many parents are driven to blame their hardships on something. I don’t judge them for their vehemence because I understand the innate desire in parents to fight for their children. I have fought in so many ways for Nat: for just the right school program; for the chance to play like other kids; for adult services so that he can work and live semi-independently. But most of all, I have fought to understand him and to have a relationship with him. And that takes learning the best communication approaches and a lot of patience and compassion.

I fear that all this focus on the evils and causes of autism is actually going to harm autistic people in the long run. Currently all we can see is autism, the “thief that steals children,” when what we need is support services and accommodation for autistics. Autism is not the monster that ruins people’s lives; rather, the monster is a society that focuses on lawsuits and anger, and ignores the needs of autistic people and their families.


I know I will be facing a shit storm by stating this, but I don’t think vaccines caused my son’s autism either. I had boy and girl twins and could tell almost from birth how very different they were. Even as a newborn my son avoided eye contact, he would not even focus on his baby mobile. I remember asking the pediatrician at his six months baby checkup “does he know I am his mother or am I just the nice lady who gives him a bottle?” He never seemed to have that need for mom like newborns do, he never baby babbled or smiled and I can remember being very worried and perplexed as I had another infant who was the exact opposite. My mother mentioned to me when he was about six months old that she was concerned he might have autism. Even at that young of an age he was already exhibiting some of the symptoms. I don’t know what caused my son, Matthew to have autism, either. I was 37 and a first time mother and had excellent prenatal care. The “why me” disappeared many years ago, and each day is spent loving and appreciating my son, my child, whom I am very glad that God did not give to anyone else.

— added by Sharon L. on Thursday, February 26, 2009 at 4:36 pm

Bravo, Susan. Very well stated and well timed. Does vaccine injury happen? Absolutely. Do vaccines cause autism? In my opinion, absolutely not. I think it’s sad how many people spend so much time tilting at the windmills of cure and causation, when their time could be much better spent doing what you describe.

Brace yourself for a deluge of nasty-grams from people who disagree with you, though. Sigh.

— added by ASDmomNC on Thursday, February 26, 2009 at 8:02 pm

It’s too bad that NPR wouldn’t accept this commentary, because it needs to be said.

— added by Andrew on Friday, February 27, 2009 at 6:20 am

I know vaccines didn’t cause my sons autism…wanna know how I know?…cause he has never been vaxed! I also could tell from early on that something was off, including some things you mentioned about Nat in your book, the exaggerated startle reflex and those big big eyes! Ofcourse when I confided my concerns to those around me at the time they said it was all me and I was depressed,nuts, and couldn’t enjoy my baby…whatever!

— added by eileen on Friday, February 27, 2009 at 8:49 am

It is too bad your commentary wasn’t accepted. Mostly autism in the news is about the “cure.” I don’t know if vaccines caused my daughter’s autism. I go back and forth. I do know that a change in her educational approach has made a HUGE difference.

— added by Susan on Friday, February 27, 2009 at 12:12 pm

I totally agree. Jarrett was always a bit off even though he hit developmental milestones on time and even early. My ex sister in law may have tried to help but in her own special way that was not remotely helpful. Since she is a teacher his dad’s family considered her the foremost authority on kids, so when she’d say things like I think Jarrett has ADD or when Christopher was his age he did this… More annoying than helpful, since I felt like she was saying My kid is better than yours since they aren’t exactly alike in every way. One memorable summer we all went on vacation together, which was a total disater. Jarrett would scream at people and the doctor we were seeing then said it was a phase and ignore it. He also found great fun in throwing sand straight up in the air. My brother in law actually screamed in Jarrett’s face and his wife freaked when Christopher, who had be watching Jarrett throw sand and watch it shower down over him decided to come bug Jarrett and ran throw a sand shower and of course got sand in his eye. This was all before Jarrett was diagnosed. Max was born when Jarrett was 7 and from the start was totally different from Jarrett. Personally I think in my family there is a genetic autism streak:Jarrett, 2 nephews a cousin’s daughter and my brother and I are convinced we have a touch of autism ourselves.

— added by cameramom on Friday, February 27, 2009 at 3:44 pm

I think vaccines do cause autism- and so do thousands of other things. It wasn’t vaccines in my son’s case. I agree with you that we need to fund services/supports. But research does need to be done on causes and treatment. Autism is on the rise and recent studies have shown that it’s not just better diagnosis- it is a true rise in incidence. I think there is good evidence that at least in some cases “autism” is caused by underlying medical problems that are exacerbated by environmental insult (vaccines, viruses, toxins in environment- just a few). There is no sense for people to fight about causes, treatments, educational methods, care, etc…. We are talking about a HUGE spectrum of people here- the causes, treatments and supportive measures are going to vary!
By the way, I no longer vaccinate my children on the CDC schedule, not because of autism, but rather because my husband is a physician and we agree that it’s a ridiculous number of unnecessary vaccines pushed by pharm companies on little babies.

— added by Anonymous on Monday, March 2, 2009 at 1:06 am