.

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.

Naomi Rodriguez December 23, 2012 at 07:13 AM
What an amazing story. Thank you Michael and Jennifer for sharing.
Paul Fiore December 23, 2012 at 09:37 PM
What an amazing story for someone who does have Asberger's. Coming from someone who has Asberger's, I know what it feels like to be bullied or have social issues. My peers would constantly judge me by social skills. Like you Michael, I had the same problem with making or maintaing friends in school. I'm thankful for the teachers in school. In college, I had a smoother transition. I did a lot of social events like playing sports or even hanging with friends. Though, I went to Gateway and got a 3.3 GPA. I'm going back to school this January and getting married in 2014. Being in group like ASRC helped. However, in school I wish there was more done. I wish there was a way to educate everyone on Autism.
Carrie Weeks December 24, 2012 at 04:05 AM
Great story. My daughter also has Asperger's, and like Michael, she is very gentle and kind. (And also saves insects and spiders). She is the first to offer help to other kids or teachers, and loves making things for other people. She does struggle socially too. She can be very outgoing so she is able to make friends, but often has trouble keeping them because they don't understand the way she is. She does get picked on a lot, but thankfully this year at school she has met some nice girls that she has some things in common with. Thanks for sharing your son's story.
donna December 24, 2012 at 01:47 PM
Love to hear good outcomes, parents need to be on top of this for the child's sake, seems like all these kids do, a lot don't get the support from the parents and that's just sad.
Sharon Pealer December 25, 2012 at 12:45 PM
Thank you for writing this! My son also has Asperger's syndrome and sadly we now wait for the media to place blame on one of the sectors of the autism spectrum when something horrible happens. I cannot say that the persons who have done these horrible deeds were not on the spectrum but I do know that the autism was not the reason for their actions. My son is even now working on caring for an abandoned cat that we rescued from Sandy. The poor thing had spent the summer living out in the wild and had lost trust of people. Because of the time and patience that he has spent with this cat it now sits happily purring on his lap asking to be pet even more. Like your son, mine is now in college and has found that he fits in better and has friends, but we were fortunate because the school system in our town did work with us and had social groups that fit his personality and interests.
Nancy usich December 25, 2012 at 03:35 PM
What a beautiful story. Thank you so much to you both for sharing. We can all learn from your experiences and respect differences. That child who looks at something in a unique and unusual way could be the adult who finds the cure for cancer or.... Nancy Usich
Hope Rice December 29, 2012 at 12:01 AM
The world should just be filled with people like you! What a wonderful world it could be!
Jamie Patton January 03, 2013 at 05:15 AM
Thank You for your encouraging words, my son was recently diagnosed with aspergers, adhd,several learning disabilities, and i feel like i have read everything on these subjects, and the future outcojes don't seem very promising for his future, but you have made me see that college and a good future may still be in the cards for him. Thank You, Jamie Patton
Jennifer Gross January 07, 2013 at 07:04 PM
Paul: Thank you so much for sharing your experience. Growing up with Asperger's is hard, and stories like yours give me (and many others) hope. I wish you much happiness in your future.
Jennifer Gross January 07, 2013 at 07:07 PM
Carrie: Thank you for sharing your daughter's story. Many people don't look past the often off-putting behavioral issues of kids with Aspergers to see the wonderful people beneath the surface. Anyone who takes the time receives a priceless gift of knowing the gentle caring souls that our children have.
Jennifer Gross January 07, 2013 at 07:08 PM
Sharon: Thank you for sharing your son's story of success in college. I wish him all the best in the future.
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.

Boards

More »
Got a question? Something on your mind? Talk to your community, directly.
Note Article
Just a short thought to get the word out quickly about anything in your neighborhood.
Share something with your neighbors.What's on your mind?What's on your mind?Make an announcement, speak your mind, or sell somethingPost something
See more »