Pictures sometimes lie

I love to take pictures.  It's a bit of an obsession with me.  Yesterday we went to a friend's lakeside cabin.  We were delighted to be invited, because Janey adores the water, boats and the friend.  I took a lot of pictures, and in looking at them, I thought a lot about how I sort out which pictures I actually keep and look at.

I don't save a lot of pictures of Janey when she is upset, screaming, unhappy, lashing out or crying.  There's a couple reasons for this.  Of course, I want to remember her as happy, and not sad.  Also, I've read a lot of opinions that people feel it's just wrong to post pictures of their kids when they don't look their best.  The argument usually is that it's not fair to the children.  I also, like most people, just like happy or calm pictures best.

But it's striking me lately that pictures lie.  Or they don't tell all the truth.  If you look at all the pictures I have of Janey, it would be very hard to really know her story.  I don't take many pictures of her when she's biting her arm, or hitting someone, or crying hysterically, or screaming.  I take pictures where she looks, for the lack of a better word, close to "normal"

And so, when looking at yesterday's pictures, a lot got left out.  Janey had a wonderful time most of the time, yes.  She was happy in the car all the two hour ride up, she danced with happiness when we got out, she was thrilled to "ride" in the docked rowboat, she had a great time going in a little paddle boat with her father and brother, she ran around in the big yard joyfully for a long time.  But around five, the witching hour, she lost her cool.  She screamed for a long time, and then, when I tried to comfort her, bit me, very hard, on the hand.  On the ride home, she tried over and over to bite Freddy.  We came home a bit discouraged, although the majority of the day was great.

But looking back at the day, the hard parts won't be documented.  And sometimes, I think this does our kids a disservice.  I know when thinking about my life, I don't like it to be whitewashed.  I don't want to think every single moment was joy and contentment.  Is that what we want our kids to think?  Janey's anger and sadness are a big part of her life, but by blocking that out, either through choice or from societal pressure, we are left with a sanitized view.  People would be forgiven, if they didn't look further than pictures, to think autism was an interesting and quirky variation on the norm.

I don't think I'll start taking or post more pictures of Janey when she's upset, though.  I'm not quite there yet.  But I wish that I felt freer to do so, both freer from within and freer from without.

Autism and the Misconception of the "Magic" Mental Disorder A Guest Post!

This is a guest post written by my older son William, a sophomore history major at Brandeis.  He's an amazing writer and researcher, and I am so proud of him.

As a millennial and the older brother of my sister Janey, I have surfed the internet countless times, and I often find myself drifting to articles about autism and other mental illnesses (if one classifies autism as a mental illness, a debate which I will not get into right now!), partly out of my own curiosity, and partly as a way to understand the difficulties that Janey faces. One thing that always strikes me is the amount of lists, sometimes poorly compiled, of famous individuals who people speculate had autism or other mental disorders. People say that Albert Einstein, Thomas Jefferson, Alan Turing, Vladimir Putin, William T. Sherman, and even Abraham Lincoln could have had or have autism. I am not sure if the people compiling these lists are psychiatrists, but they do have a goal in mind.

I think that it is out of a genuine compassionate desire that people say that truly remarkable individuals throughout history have had difficulties such as autism. Countless movies such as The Aviator, The Rain Man, and A Beautiful Mind attempt to chronicle remarkable individuals’ lives and document their struggles with mental illness. Even avenues such as YouTube seem to eschew this benign praise and recognition of remarkable people with mental differences, as evidenced by videos such as “Jake, Math Prodigy Proud of his Autism”. And while drawing a correlation between something like autism and outstanding achievement or skill tries to empower the autistic community and other communities scarred by prejudice against people with disabilities, the extent of these correlations in modern media obscure a critical struggle of people and families of people with disabilities: the agonizing pain of the disability itself.

Sure, I concede that perhaps Albert Einstein had autism, or that Howard Hughes had OCD, and these two disorders probably shaped the greatness they became know for. Yes, sometimes individuals with autism achieve great fame and recognition and thus empower other autistic individuals and their families. I know all of these things to be very true. But, pain is the hallmark of any disability, and autism is no exception. Howard Hughes may have created spectacular movies, but he also suffered enormous pain everyday from his brain’s unrelenting desire for cleanliness and compulsion. Similarly, autistic prodigies such as Daniel Tammet can learn the Icelandic language in a week, but suffer tremendous pain in what for “neurotypical people” are everyday social interactions.

I know I may come off as stiff, formal, and academic right now, and in many ways I am. But what I have said resonates deeply with me and how I view my sister Janey. When my mother tells other people that Janey has autism, I want people to realize that that means Janey lives with constant, unrelenting pain everyday. Things that most people take for granted such as speech are tremendously difficult for Janey, and thus she tries to cope through screaming agony or what a parent who has not experienced autism first-hand might call “misbehavior” or even more disparaging, “bad parenting” (PLEASE never say that last one to my mom!). Janey cannot express even a simple desire for something like food easily. Partly out of our human nature and our frustration for Janey, the entire Amara family is profoundly affected by the chronic disability that Janey has called autism. Yes, she shows a passion for music, but that doesn’t mean she’s playing Carnegie Hall on the weekends. If you take anything away from this entry, it’s this: when you learn my little sister Janey has autism, don’t let the first thought in your head be the misconception that Janey is a savant with almost magical abilities. Let the first thought be that Janey, like millions of other autistic people and other people with disabilities, suffers tremendous, chronic pain everyday from her disability and this pain has profoundly shaped her life and the lives of her loved ones.