In our print magazine this month, Hanna Rosin tells the story of her son Jacob's diagnosis with Asperger syndrome, in the context of the psychiatric community's recent change in the definition of the disorder to part of what's now known as autism spectrum disorder.
We received a lot of thoughtful responses from readers who have experience with the disorder in their own lives, themselves or their families, about how the diagnosis has affected them, and what the changes in definition mean to everyone. Here are excerpts from some of those stories.
I remember starting home-based behavioral therapy and that three months after beginning his sessions, Elliott went from speaking approximately 10 words to testing in the low-average range for speech. And I remember the very night that Tom and I tucked him in and told him we loved him, just as we did every night, except that this night he said, "Mom, I love crackers," and how I cried and cried because I knew, based on his true passion for crackers, that he really understood what love meant. (Later, he told us he loved us, too. Priorities, you know.)
—Kammy Kramer; Eagan, Minnesota, USA
Sean and I went to Chick-fil-A for lunch. He sat across from me, smiling, while eating his nuggets and fries. I got the feeling he was trying to cheer me up. He pointed to the play area and said, "Play." I gave him the okay and he played in the playroom looking like all the other kids. You wouldn't be able to tell the difference until you tried to talk to him. I watched him quite amazed that he could do so much by only using his nonverbal skills.
That night as Sean slept, I climbed into bed with him. I felt I had failed him. I started to cry out of pure frustration. It was just beginning to dawn on me that the doctors had just as many questions as I did. I had to expand my search for someone who could help him.
At this point, no one knows Sean better than I do. I realize I am going to have to take the lead in deciding his treatment and I can't depend on any one doctor or specialist.
—Jennifer Murphy; Olney, Maryland, USA
Loneliness has been a constant in my life since I cannot relate freely with almost anybody. The way my mind works shapes my outlook on life, which is almost always regarded as unorthodox. Most people tend to shy away from opinions and insights that do not fit well with their patterns of thinking, and thus I tend to avoid being in the companionship of people in general.
All this changed a few years back when my second child, Antonio, was diagnosed. It is through him that I finally found peace with myself. A revelation took place within my psyche. The label helps, I must admit, for it is a bridge that unites with others of our sort.
—Marco L.; Quito, Ecuador
I can’t remember the first time I actually heard that my brother had Asperger's syndrome. (Of course, now he never officially had it because the disease doesn’t exist anymore. High-functioning autism is the preferred term.) I never really thought anything was wrong with my brother. He was just a bit weird—different and intense—but the Asperger's diagnosis at first relaxed me. It meant those times when he was "weird"—the intense fights (mostly emotional, sometimes physical with my parents), his inability to handle the possibility of being 10 minutes late to the cinema, his penchant for obsession, his fruit snobbishness (he won’t eat fruit unless it’s cold, firm, and new)—could make sense to me; there was a reason. What I still can’t comprehend is how he’ll be able to go on living in a world not designed for him.
There is a trend in articles, specifically about autism and Asperger's, that belies real experiences: They are far too positive. I understand why this inflection has found its way in to articles about Asperger's. Asperger's and autism are mental health issues that are permanent, and non-debilitating. Unlike, say, bipolar disorder or depression, autism is seen as something that can and has been overcome by people. These people succeed despite, and sometimes because of, their diagnoses. I’m not saying there shouldn’t be any positivity about the disease: One thing that more media coverage has given my family is a sense of understanding, not confusion, when I now tell friends about my brother.
But if you Google “autism and aggression,” you begin to see the real world in comments and in articles, where exasperated family members plead for help and guidance about what to do when a child is constantly aggressive and has constant meltdowns. Articles on the issue of Asperger's just never seem to get this side across. They always seem far more interested in letting you know how good the person they know is at mathematics or computers when, from my experience, this is an overly-attributed skill. This is not to say that no autism kids are excellent at STEM subjects; it’s just that those are not the only things they will be interested in. Films and TV are more likely from my experience.
I think the reason there is a lack of knowledge about autism and aggression is because for children who are just barely coping with their illnesses, it’s very embarrassing. It’s very difficult for both the parent and the child to actually tell other people what’s going on. I still don’t believe anyone outside my family unit truly knows the extent of the struggle and the fights that I have witnessed. Still, today, as I think about all the particular incidents when my brother could not handle it, I struggle to write. I see snapshots of my brother lying on the ground in a car park in 2010, during a trip to Burger King in 2004, and on my family living room floor over and over again. I think of these moments and I become frustrated at both the avoidability of the blowups and their shocking inevitability. It almost makes me too sad to write.
Unfortunately, this new positivity and acceptance creates quite a problem for the people who don’t succeed, or make progress, or worse—take steps back. What happens once you drag someone through the school system, the university system, and then nothing remains for them at the other end? What happens when the structures begin to break down and there is no easy quantifiable next step to take? How do you manage the expectations of someone who is self-aware enough to know that he is smarter than most, but not self-aware enough to realize his own rigidity and tactlessness?
Anecdotal evidence is all I can provide for the traits he shows. He can’t understand why a person he just had an interview with doesn’t email him back within 24 hours to offer him the job or not, because that’s how he would do it. This lack of response and its seeming unreasonableness will lead to a panic attack and depression—aided by the fact that he'll have thought so much about the interview over the previous 48 hours, that he won't have eaten anything.