Category Archives: vaccinations

The Impact of Fearing Autism

Last night I spoke with my brother by phone.  He is unable to travel.  His voice was so raspy, his breathing slow and labored, had I not known it was my brother I was speaking to, I would not have been able to guess from the sound of his voice.  He wasn’t able to complete a sentence without pausing to take a breath.  It was clear listening to him that the act of talking was incredibly difficult and painful.  When we said good-bye to each other I was overcome with emotion.

My brother is very slowly recovering from pertussis, more familiarly known as whooping-cough.  Because so many parents have chosen not to vaccinate their children for fear that vaccinations cause autism, whooping-cough is on the rise.  I’m including some links ‘here‘ and ‘here‘, for those of you who may not be aware of just how serious and deadly whooping-cough is, not just to our children, but to teenagers and adults too.  This is the other side of not vaccinating, the side so many do not consider.  People of all ages are getting sick and even dying of diseases most of us assumed had been eradicated long ago.  Whooping cough, once unheard of, is now on the rise.  In my brother’s case, his coughing was so extreme he would vomit, was unable to breathe and speaking became impossible.  Fortunately he is slowly getting better, but whooping-cough can take more than three months to recover from, for those lucky enough to recover at all.

My children are vaccinated.  I am vaccinated.  I have had moments in the past when I wondered if there was a connection between vaccines and autism.  I never believed vaccines caused autism, but I did wonder if it exacerbated pre-existing conditions.  I no longer wonder because I stopped fearing autism and listening to those who would have us fear it and those who are Autistic.  And it seems this is what it comes down to.  When we fear “autism” so much that we are willing to put our child’s life at risk because of those fears, we must, as a society, look at what we are saying and believing.  Organizations intent on fueling those fears for monetary gain are being dishonest with themselves when they refuse to see the connection.  Adults, teenagers, children and babies are dying from preventable diseases because of people’s fears regarding causation and vaccinations.

When a parent makes the decision to not vaccinate their child they are not just putting their own child at risk for developing life threatening diseases, they are putting all of our lives at risk.  It’s important that we are clear about this.  None of us live in a bubble no matter how careful we might believe ourselves to be.  The decisions we make affect more than just ourselves and our families.  The decisions we make have larger ramifications that impact everyone we come into contact with.

For those of you on the fence regarding vaccinations – I understand the dilemma.  I understand how difficult it is.  I understand how debilitating fear can be.  Really I do.  I’ve felt it.  But in the end your decision comes down to this – are you willing to put not only your child’s life at risk, but your own and every person’s life you come into contact with?

Completely unrelated photograph taken yesterday of the rocky mountains

Perfection

 

IS Autism an Epidemic?

When Emma was diagnosed as Autistic, we read that autism was an “epidemic”.   I remember the figures – 1 in 166.  In 1980 the rate was 1 in 10,000 according to others it was more like 1 in 2,500.  Andrew Wakefield had published his “study” of 12 subjects in The Lancet, regarding his belief that vaccines were linked to autism, six years before.  The Lancet’s retraction of the Wakefield study did not occur until 2010, and the fallout was, at the time of Emma’s diagnosis, being widely felt.  What I didn’t know, until much later, was that Wakefield had applied for a patent just nine months prior to the publication of his, now discredited, study for a new MMR vaccine that he said was safer.  Wakefield, it seems, stood to make an enormous amount of money.  Yet I and many parents like me wondered if there was truth to Wakefield’s “findings”.  Despite subsequent studies showing that his findings were false, people wondered.  After all, autism was an “epidemic” so what was causing the epidemic?  It seemed vaccines provided an answer.

Except, what if there was no epidemic?  What if the word epidemic was being used by organizations intent on raising money?  These were the questions I began to ask.  If autism WASN’T an epidemic, then where were all those Autistic children when I was a kid?  And where were they now?  Why didn’t I know dozens and dozens of Autistic people?  They should be everywhere I concluded and since I didn’t know of any personally, I decided to look for them.  So began my search for Autistic people.  (I know my wording sounds archaic, but I actually meant for it to, because it illustrates my thinking not so long ago.)  I periodically googled phrases like – “where are all the autistic adults?” or “Autistic adults” or “Autistic adults in the work place” or anything else I could think of that might lead me to them.  I found very few.  I came upon Temple Grandin and Donna Williams, whose books I immediately read, there were a handful of others, but the shelves of the “Special Needs” section of the bookstores I frequented were filled with increasing numbers of memoirs written by parents, not Autistic people.  When more and more people began blogging, I started googling “Autistic blogs” and came up with not a one.  For years I would periodically look and when my searches came up empty, I concluded – It must be an epidemic.  It seemed a logical conclusion.  And eventually having concluded that autism was in fact an “epidemic” I stopped looking for Autistic adults.

Then two things happened within a six-week period.  A follower of this blog sent me a link to Julia Bascom’s blog – Just Stimming and another parent encouraged me to read the anthropologist and father of an Autistic child, Roy Richard Grinker’s Unstrange Minds:  Remapping the World of Autism who suggests autism is not an epidemic and the current rates are a more accurate reading of what has always existed.  It was a one-two punch; I began to question everything I thought I knew.  From Julia’s blog I began reading and reaching out to Autistic bloggers.  Through my, at first tentative, communications I began to find many, many more.  It was literally like discovering an alternate reality, and as mind-blowing as anything I’ve ever experienced.  The more I looked, the more I found.  Within eight months I went from not personally knowing any Autistic adults to knowing hundreds of people who are my age and older.

One friend of mine and I were discussing all of this the other day.  He pointed out that many people, like him were beaten, often brutally by their parents to make them stop their undesirable behaviors that might make them “stick out” or in any way noticeable.  He said, “People like me would hide our Autistic traits as best we could.  We were still considered the weird kids and the outcasts, but we were not called Autistic.”  He reminded me that he and others like him were trying their best to remain as “inconspicuous as possible because the only signs we had were the “Kick Me” signs that would be put on us by bullies.”  He then went on to say, “We had to do our best to be invisible and/or find a way to blend in or hide to stop the beatings by family and class-mates.”

As I think about all of this, I have more questions.  What about the autistic girls who were like my daughter?  Would my daughter, had she been born in the 50’s, have learned to “pass”?  And if so, what does that say about our school system, because Emma is in no way near grade level?  Would she have been deemed learning disabled, but taught how to “behave appropriately”?  Would she have, through punishment, been able to conform?  What about her language?  Would she have just been thought a “quiet” child?  The little girl who, if she’d been punished enough, learned to sit silently in the corner?  At what cost would this have occurred?  Or would we have been told to institutionalize her for the “good of the family”?  Would we have been advised to save our son and ourselves from being “dragged down”?  Has our thinking changed so much?

I ask these questions honestly.  It took me a very long time to find all those Autistic adults I’d been looking for since my daughter was diagnosed in 2004.  When I was still looking, I never, not for a second, thought in finding, I would also find hope.   It never occurred to me that I would form relationships that are, not only important to me, but relationships I cannot imagine being without.  Friendships that are vitally important to me, people I love and look forward to seeing and spending time with.  People who would patiently explain to me what it was like growing up in an era that did not “recognize” autism.  People who try to help me understand what it is like living in a society that does not want to see or hear them.  People who do not enjoy the basic rights I enjoy and do not even think about.  People who are condemned, abused and misunderstood.  And yet, that is exactly what happened.