My Sister and Autism

My sister is developmentally disabled.  She is diagnosed with cerebral palsy, mental retardation and autism, but the last of these diagnoses has not always been a part of her life—something I only came to remember in the past few weeks.  Here’s my autism story.

It was late in the 1980s when the movie, Rain Man, came out starring Dustin Hoffman and Tom Cruise.  I was a student in junior high school, and my sister was still living in my home with us.   I can distinctly remember thinking that some of the odd tendencies and characteristics about Raymond Babbitt (Hoffman’s character) reminded me of my sister.  No, she wasn’t a genius at counting or anything fascinating like that.  In fact, my sister is nonverbal, so even if she could count, we never knew it.  But there were things about his character that reminded me of her.  I stored those thoughts in my mind for a few years without ever actually telling anyone what I thought.

Fast forward a couple of years when my sister has moved into a residential group home program in my home state of Tennessee with an organization similar to ARC Marion.  I’ve talked before about how she and I were able to attend high school together, so I did get to see her pretty regularly even if just for a moment.  I was also in a speechwriting class my 10^th grade year when we had to do an educational speech.  I chose to give mine on autism spectrum.  I remember researching how the character Raymond “Rain Man” Babbitt was a savant which makes up a very small percentage of those diagnosed with autism, and I researched more and more.  Remember at the time, autism wasn’t very well known.  The numbers of those with the condition weren’t nearly as staggering as they are today. 

I told my mother at the time, that there were a lot of similarities between my sister and those associated and diagnosed with the disorder.  Here are a few examples: 

1) She loves routine and hates a break in that routine.  When we were in school, she would wait by the door of her classroom for the three bells to ring after lunch, because that would mean she could go for her daily walk through the halls.  The third bell was the tardy bell, so the halls were basically empty.  If her teacher or peer tutor wasn’t ready to go, she would be standing at the door, everyday, getting antsy to go on her walk.  Additionally, my mother picks my sister up every Saturday from her home and takes her out for the day to get her hair done and go to the mall, etc.  On days when my mother can’t pick her up, my sister tends to have behavior issues and just hasn’t been able to understand when that routine changes.

2) She loves music but is very specific in what she likes and doesn’t like.  She can’t talk, mind you, but she can certainly express her opinions of music through grunting, crying, acting out or laughing for joy.  I don’t know what it is with autism and music, but anyone who knows anything about autism can tell you there’s a strong connection.

3) In her frustrations she would often be abusive to herself and others.  She would bang her head, bite her arm or pull my hair when she was upset.  While some might associate negative behaviors with being bratty, the way she acted was more than that. I was sure of it.

4) She can spin ANYTHING!  As a child, she used to sit in the floor of my grandmother’s kitchen and spin a metal lid for what seemed like hours.  She could do it over and over always finding joy in it and never missing.  With just a fling of her wrist, she would have it going, and no one else in the family could ever do it like she could, every time.  I remember it as a child, but I never really associated it with autism until later in life.

Those are just a couple of my personal examples that spoke loudly to me, so as a high schooler I mentioned it to my mother.  I remember that at one point my mom actually told my sister’s doctors and caretakers what I thought and that she might be autistic.  And I remember them passing it off at the time.  I can remember when my Mom told me that they tested her or checked her or something to that effect, and no, she wasn’t autistic….

So, fast forward to present day.  I was able to look at some of my sister’s paperwork over the holidays last year and saw on her medical diagnosis that autism is now listed.  It didn’t occur to me until just last week that this is new news… when did they make this diagnosis?  What did they do to determine it?  Surely they aren’t just going off of what my mother said many years ago, since they dismissed it way back then.  

I don’t know the answers to those questions, but what I do know is that she now has the correct diagnosis.  And I’m glad I asked the questions!  If there’s one thing I want to do by telling my personal stories it is to encourage families of those with developmental disabilities to not give up advocating and asking questions for their loved ones.  Don’t get stuck in the box of a diagnosis if you think there could be something more. 

Another sibling of a DD individual mentioned to me that she used to tell her mother that her sister’s behaviors weren’t associated with her diagnosis at all.  In fact, in some instances the behaviors were just down right “bratty,” and any child would be having them regardless of mental retardation.  Sometimes those are just the things we need to see and realize.  Once we get to that point, we can start treating every individual with DD in the way that they need (and may not always want) to be treated.  Families, and especially siblings, I ask us to unite and advocate.  Ask questions.  Demand answers.  While there are times we may be incorrect in our judgment or observations, more times than not, I bet we’re right!