Monday, June 2, 2014

Meet A Statistic

Statistics can be so impersonal.

You can read, for example "the rate of autism is one in 68 children in the United States".  Or, that, just two years ago, it was one in 88.  And before that, one in 100.  And before that....but I don't want to talk about autism statistics today.

What I want to talk about is one of the people in this country with autism - my brother in law.

The world my brother in law grew up in influenced a lot of his life, as it does for us all.  It also influenced the choices that were made for him - both in childhood and adulthood.  It shaped his personality and how he behaves now.  The world of the 1950's and 1960's was one so different than now.

Let me give you a little peek into my brother in law's history.

My brother in law was born in the 1950's, having two older siblings.  Both siblings developed normally. The older is my spouse.

In his infancy, my brother in law, who I will call "B" in these posts, became sick and ran a very high fever.  According to my mother in law, the fever was the dividing line between normal development and things that seemed more and more wrong, compared to how his two older siblings had developed.

The medical profession's answer to that was to offer her criticism and blame.

For example, he wasn't showing any signs of learning to talk and the doctor said it was because she was "spoiling" him.  "B" didn't speak until he was nearly five.

When it came time for his first communion and confirmation, the priest didn't want him to participate, at least not right away.

At some point in education, "B" was put into "special education" classes at what in New York State was called BOCES.  In those days before IDEA and also something called "Section 504" the right of the disabled to a free, appropriate public education did not exist the way it does now.

The BOCES placement did not work for my brother in law.  Every day he would come home, bullied yet again.

At some point, a caring teacher saw something in "B", and he ended up back in "regular" education, graduating high school.  Remember there were no support groups, no Internet, and not even a name for what my brother in law was experiencing.   Until one of her friends talked my mother in law into taking my brother in law to a special place where they would study him, and there would finally be a name, an explanation.

He was 19.  And, the name was autism.

After a short lived try at college (again, without any supports), it was found that my brother in law had some ability to work with his hands, and "B" ended up at an organization called The ARC.  Back then it was called the Association for Retarded Children.   This is a name that would never be tolerated today in the United States.  But, for my brother in law, this became a haven.  The ARC has a long, distinguished history.  His local ARC was founded, in 1974, by parents who craved better for their disabled children.  This year, it celebrates its 50th anniversary.

Here's some more about my brother in law.

My brother in law craves routine, as do all with autism.  His senses are super sensitive. Thunderstorms frighten him.   He had frequent temper tantrums as a young child until he finally learned to talk.  Even today, his ability to carry a conversation is limited, and most conversation is confined to a few specific topics (the weather, a baseball team he loves). 

"B" is not easy to know. He speaks in a flat voice, not making eye contact. He has an ability to remember dates and the weather on each day of his life, but do not think of him as "Rain Man". Every individual "on the spectrum" as the autism spectrum is called, has different strengths and weaknesses.

But, it is clear that he needs help with a lot in life, including advocating for his own future.

Tomorrow - more about the guardianship process my spouse is undergoing.


  1. That's a touching story.. may God give you strength and keep you motivated to fill his life with happiness and joy.

    1. Thank you. Feeling my way, hoping we do the right thing. I've found so many people in his situation do not have caring family - sad, but true. We are lucky to have each other.


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