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What It's Really Like to Live With Aspergers

Here’s what I know about my son, who has lived with Aspergers for 22 years: Michael is one of the gentlest, kindest, and most compassionate people I know.

 

The unconfirmed media reports that the Newtown shooter Adam Lanza had Aspergers Syndrome have now gone viral.  As of yet, we don’t know what was behind this unspeakably horrendous act, and we may never know for sure what went so wrong with this young man that he was compelled to take the lives of 27 children and adults.  It’s an understandably human need to find an explanation when something this horrifying happens, but rushing to judgment, quite possibly the wrong one, has the potential to wreak terrible damage on individuals who already struggle for acceptance on a daily basis.

Here’s what I know about my son, now 22, who has lived with Aspergers Syndrome all his life, and because of it, has experienced bullying, intolerance and social isolation at the hands of his peers and far too many of the adults who were supposed to protect him:  Michael is one of the gentlest, kindest, and most compassionate people I know, and has an enduring respect for the sanctity of all life.  In fact, he even carries insects and spiders outside when he finds them in the house. 

Michael struggled for years to gain acceptance and understanding in a society that has little tolerance for those who are different.  Not only did he succeed in developing effective social skill and making friends, but more importantly, he learned that he has much to offer the world through his unique gifts.  Remarkably, he says that he’s a better person because of what he went through. 

Just one day after the tragedy in Newtown, I had already seen early reports that the shooter may have had Aspergers, and had the opportunity to spend time with Michael, who is now in graduate school.  Wanting to get a sense of how the terrible news was affecting him, I carefully guided the conversation in that direction.

His reaction was immediate and filled with horror at the loss of innocent lives due to one person’s violent act in a place that should have been safe. He identified strongly with the survivors, and spoke passionately about the need to respect the privacy of the Newtown community during this time of loss and grief.

This profoundly emotional reaction may come as a surprise, since a commonly held misconception is that people with Aspergers lack the ability to feel emotion or to empathize.  As I’ve seen again and again, it’s not the lack of emotion or empathy that causes people with Aspergers to appear detached or even cold; it’s an inability to process the bombardment of stimuli from the outside world.  Michael can read both verbal and nonverbal expressions of emotion by others, and can feel what they are feeling, often to the point that he must withdraw in order to cope.  And when he tries to express his empathy, he is driven by his intellectual understanding of what is appropriate, rather than the ability to intuit the other person’s perspective.

Almost exactly two years ago, Michael shared his story with state legislators at an event in Eastern Connecticut. He spoke so eloquently that I’ll let his remarks speak for themselves.

...............

I am currently a junior at Clark University, double majoring in math and computer science.  I don't like public speaking, and I'm here partly because my mom asked me to come.   But the main reason I’m here is that I don't want other kids to have the experience that I did.  To tell you the truth, I can’t remember a lot of detail about my childhood, and it’s painful to talk about a time that was so bad I wanted to die.  Maybe that's why I don’t remember much. 

But I do remember being bullied from the time I was in elementary school. I was impulsive and often spoke without thinking, and I had great difficulty making friends.  My teachers decided that I was just acting out, and that I was deliberately being disrespectful.  When I went to adults for help, I didn't get it, and more often than not, I was the one who got in trouble.  I was miserable because I thought there was something wrong with me.  Everyone else just thought I had a bad attitude. 

When I was nine, we moved to Connecticut, which was when I remember life getting much worse for me.  I didn’t seem to fit in, and making friends was harder than ever.  I'm not good at making friends; and when I do, it takes a long time because I don’t have good social skills. When I was little, I did have one or two friends, but they moved out of the area.  I tried Boy Scouts, playing on teams and joining clubs, but nothing ever really worked out because I wasn’t good in groups.  I got used to spending my free time at home with my mom and my sister, or on my computer, when the other kids were hanging out with their friends at each other’s houses, and going to school events. 

By then, I didn’t care as much about having a social life like other kids, because none of the kids I grew up with had ever treated me with respect. Eventually, some of them figured out that I was good at math and they started asking me for help.  But that didn’t necessarily make them my friends.   When you're in high school, and your peers remember all your bad times, it sticks with you forever.  What's worse is that a lot of the teachers and administrators let the kids know that they didn't like me either.  Luckily, there were a couple of teachers and an administrator at my high school who saw a lot of good in me and believed in me.  If it weren't for them, I would never have learned that there actually were adults in the school system that I could trust.  I think they were a big part of the reason I made it through high school. 

When I got to college, I immediately found a group of people I get along with.  Once that happened, it suddenly seemed easier to make more friends.   Or maybe it's that I just picked the right school for me. My mom was nervous about sending me away to live at college, but I think it's the best thing I ever did.  I've grown up a lot and I've learned how to do things for myself.  I've also learned that the academic environment at college is much more rewarding than at high school; you get out what you put in. 

And at Clark, I think people are generally more accepting of quirkiness.  We have a saying: "Categorizing people is not something we do here."  It’s a little clichéd, and we tend to joke about it, but I’ve found that it’s true.  I knew Clark was right for me when I went on my first tour.  At one of the academic buildings, we saw a group of students working on film project.  It seemed almost as if it was being staged for us--it wasn't--but what I liked was how much fun they were having.  They were completely wrapped up in what they were doing, and it was obvious that they didn't take themselves too seriously or care what other people thought. 

People should have good childhoods that they remember and feel good about.  I feel robbed, honestly.  But I've done ok, and I'm happy now. 

Clark isn’t just a great place for me socially, either.  I got all A’s this past semester, and I have a 3.7 GPA.  My family is able to afford Clark because I earned merit-based grants and scholarships that have paid for most of my college expenses.

I've also been lucky because my dad had good health insurance, and my mom did a lot of research, so they could get the help I needed.  Many other kids don't have those resources, or they never find someone who realizes they need help.  Please don’t assume that kids misbehave because they are bad.  Learn more about bullying and how to help kids that are affected by it.

...............

Michael graduated from Clark University last spring, and is now pursuing his PhD at Tufts University.  There were those who predicted truly dire outcomes for him, and thankfully, they were wrong; mostly because Michael got the right help at the right time.  So I would add these thoughts to Michael’s plea:  let us now reexamine how we treat those on our society’s outermost fringes, and create a careful, measured response to the Newtown tragedy, ensuring that those who are most vulnerable can access the help they need before it’s too late.

This post is contributed by a community member. The views expressed in this blog are those of the author and do not necessarily reflect those of Patch Media Corporation. Everyone is welcome to submit a post to Patch. If you'd like to post a blog, go here to get started.

Jennifer Gross January 07, 2013 at 07:08 PM
Nancy: Thank you! I wish there were more people who think the way you do!
Jennifer Gross January 07, 2013 at 07:09 PM
Hope: Thank you for your incredibly kind words!
Jennifer Gross January 07, 2013 at 07:25 PM
Jamie, Like you, I found hope in the stories of success of others who had gone ahead of Michael. There was a time when I thought Michael wouldn't be able to go away to college or live independently, and letting him go was the scariest thing I ever did. But college was what he needed most; it was a place that accepted his "quirkiness" and offered him the kind of learning he craved, along with the meaningful friendships that he needed. I wish your son all the best in achieving his goals for a bright future. Jennifer
Jennifer Gross January 07, 2013 at 07:28 PM
Thank you so much for your kind words, Naomi. Jennifer Gross
Stuart Brainerd January 08, 2013 at 02:50 AM
This was a heartwarming and inspiring story, thank you for sharing it.

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