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FROM READERS: Bettering the understanding of Asperger's syndrome

Wednesday, January 16, 2013 | 6:00 a.m. CST

Michelle Roberts writes for the Missouri Mental Health Foundation, an organization whose mission "is to raise awareness and public understanding of issues impacting individuals and families living with mental illness, developmental disabilities and addiction disorders." This interview was originally published in an email sent by the organization.

The Missouri Mental Health Foundation (MMHF) asked Aaron Likens to discuss what it’s like to live with Asperger’s syndrome. Likens, of St. Louis, was one of MMHF’s 2012 Mental Health Champions. He was diagnosed with Asperger’s at age 20. He serves as an Autism Ambassador for TouchPoint Autism Services, where he gives presentations to teachers, students, parents, police officers and others who want to know more about autism spectrum disorders. He is also the author of the critically acclaimed memoir, “Finding Kansas: Living and Decoding Asperger’s Syndrome.”

Within hours of the Newtown shooting, Likens wrote a blog in which he stated: “The tragedy that occurred is beyond words. Moving forward though, at the way the media has portrayed Asperger’s syndrome, what type of image will we have? Will we be feared as monsters? Will the friends that some of us have begin to wonder about us? I feel those with Asperger’s have so much potential, but if the chasm of misunderstanding grows, the already difficult experience of growing up will become more difficult.”

This conversation is intended to narrow that chasm of misunderstanding:

MMHF: What symptoms/challenges of Asperger’s disorder do you wish the general public would learn about and/or better understand?

AL: The lack of eye contact and seeming disinterest in what’s going on around us (by people with Asperger’s) is often taken as a sign of disrespect. This is what makes socializing hard. For some of us, eye contact is highly discomforting. And because of this, the challenges are increased. Also, the processing aspect of life is something that those not on the spectrum can take for granted. There are times when I am going to be able to answer a question instantly. Then, there are other times where I may appear as if I am staring off to space as if I didn’t care about the question. This isn’t the case; my mind is having so many thoughts at once while processing the question and all the possible outcomes that I simply can’t react. Sometimes people take offense to this, or will make a snide comment, and when this happens, (my) confidence is certainly shaken.

MMHF: What do you think people’s perceptions are of Asperger’s disorder?

AL: Some people have said that those with Asperger’s have “no emotions” while others have said that, “they have emotions, but they don’t feel.” I’ve heard that they care too much, or that they care too little. The tricky thing here is the fact that if you’ve met one person on the autism spectrum, you’ve only met one person on the autism spectrum. Asperger’s is part of a spectrum and I think why we have this fragmented view and that the general public’s awareness of Asperger’s doesn’t include (the full spectrum of symptoms and experiences). That’s why you may hear a commentator say “all people with Asperger’s are good in math.”

MMHF: Since the Newtown shooting, Asperger’s has been discussed throughout the mainstream press. As you mentioned in a recent blog, much of the coverage has made “all things autism” seem “dangerous.” Would you please explain more about this?

AL: I think society fears what it doesn’t understand and on that first and second day the headlines I read stressed “Asperger’s.” If I was unaware of autism and Asperger’s and then all of a sudden both are linked to a tragedy like this and then there is no further explanation of what either are the initial and last impression is that autism is bad and should be feared.

MMHF: Do you think it’s right for people to mention that the Newtown shooter may have had Asperger’s, or do you think that it is irrelevant?

AL: In the hours after the tragedy the media ran with whatever the latest lead was. As soon as a lead said (the shooter had) Asperger’s, it was plastered everywhere. So do I think it’s right for people to mention? Yes, but not because a friend of a friend of a cousin said he had it. There seemed to be a race to get information out that didn’t allow the reporters to put any perspective on Asperger’s except that the shooter had it. Then, so-called experts added (fuel) to the fire by claiming that, “People with Asperger’s have anger issues, and are prone to violence.” Again, is it right to mention? If it’s a fact, then report the facts, but don’t rush information and skew Asperger’s to seem like a condition that makes people prone to violence. It seemed as though everything was reported in absolutes — and that’s how the public perceived it.

MMHF: One of the challenging aspects of Asperger’s is having and maintaining relationships. Is this a struggle for you? If so, how do you manage?

AL: It can be a challenge to maintain a relationship. It was harder before I was diagnosed, at least for myself, because as little as people understood me I also couldn’t understand them. Communication is a two-way street and back then there was a big tree blocking the lanes. Now it’s easier because I am more aware of emotions because before I was simply, “logical in an emotional world” which meant if I pointed out that a person’s clothes looked weird, in my mind, that person wouldn’t get mad because what I stated was a fact. Now don’t get me wrong, the concept of friendship is still difficult for me because anything emotional is difficult to express. However, through understanding of myself and as the awareness of those around me has increased, having Asperger’s isn’t the obstacle it once was. I believe understanding is the foundation for hope and, if those that have it can grow their understanding of who they are, and if society as a whole can understand that we process the world just a little bit differently, then maybe we will all see that everyone is different, everyone has their quirks, and in the end we on the autism spectrum aren’t all that different for those that aren’t.

MMHF: People with Asperger’s can also have mental health issues separate and apart from their developmental disability. Would you please talk about how the symptoms of Asperger’s can lead to conditions such as anxiety and depression, and what you think some of the best strategies are for combating those conditions in people who live on the spectrum?

AL: It seems anxiety is common for those that have Asperger’s. A lot of us are hyper-vigilant to our surroundings and since we have a need for sameness we often worry about change. Depression can also occur and may arise from feeling isolated, or perhaps being bullied in school which all too often those with Asperger’s are targets of. The strategy I found that worked the best was writing, but not all will find that. In my opinion the key is to find a way that allows the person to express their fears and troubles. Communication is one of the biggest obstacles a person with Asperger’s faces and we often will not express when we are hurting, or if we are fearful.

This story is part of a section of the Missourian called From Readers, which is dedicated to your voices and your stories. We hope you'll consider sharing. Here's how. Supervising editor is Joy Mayer.


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