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.
It’s the most important thing in his life, so why is it not for everyone else? The only rationales my brother finds acceptable are the explicit actions he would take. No other possibility makes even the remotest sense.
My parents, perhaps, never quite understood the sacrifice that was needed in order to truly set my brother on the right track. They didn’t treat his diagnosis as a stigma, so my brother never felt constrained by his illness. Maybe that is the reason life is so difficult for him now. His lack of comprehension of the outside world raises his expectations. He was promised that if he got good grades and passed his exams, something would happen for him. So far, that has not proved to be the case, though I haven’t given up hope.
I feel like writing this article is a betrayal. I feel like I will never truly be able to accurately represent his illness. Even calling it an "illness" is wrenching. He’s a regular person that cannot handle certain situations. The stigma attached to a permanent mental illness that affects sociability is a subtle sort of oppression to the person given it. I see my brother wrestle with his identity a lot. Some days he thinks he’s been over or misdiagnosed; other days he seems to know more than anyone else how much his illness affects him. I can’t even begin to imagine the pain that some interactions must cause him, though I can see it on his face.
"Small kids have small problems; big kids have big problems." No phrase is truer when talking about a child on the autism scale. The anxieties and inflexibilities of a child are much simpler to deal with than the deep pits of despair and intractable problems of an adult. We are on the borderlands: My brother is just sick enough to be diagnosed, but not sick enough to differentiate himself from anyone else in society. He is always absolutely fine until the moment he’s not. We dragged him through school and university, but will we be able to drag him through the rest of his life?
Part of my reasoning for writing this is to explain that the main problem with having someone close to you have autism is that it doesn’t go away; it takes a lot of effort to manage, and to deal with. This is not to say that the negative aspects I have written about are the totality of my feelings about the illness. I love my brother and have very good relationship with him, and most of the time he is fine. We hang out often and he is probably one of my best friends. However, his problems do not get fixed; they are simply managed. When the management techniques fail—and they fail more often than you would hope—the despair rears itself forward and the bright horizon of possibility recedes.
—Josh; London, England
I put my son to bed the day we found out he was autistic and lay down on the floor beside his bed. I listened to his deep, regular breathing and visualized his face. He was, and still is, more beautiful than I thought a boy could ever be. I vowed, and then repeated it again and again, that I would dedicate my life to saving him from the abyss I felt he was heading into. I promised myself I would change every part of my life—shorten it if necessary, face anything—if I could make his life better.
I kept my promise. I let my career stagnate; I researched mainstream and alternative treatments; found therapists and doctors; applied for special education; convinced insurance companies to cover him; got up night after night when he didn’t sleep. I suffered from chronic sleep deprivation for 10 years. My marriage disintegrated, our finances became precarious, and finally I moved with my son to another country where he is assured lifetime services that are better than what we could expect in the United States, but far from perfect.
In a few years he becomes a ward of the state, and I have begun the process of getting him adjusted to institutional life. He is nearly 15-years-old.
He used to be on lots of drugs to control his behavior. He isn't anymore. For the first time in his life he doesn't wear diapers. He gets frustrated but he rarely has tantrums. And when he does, he knows to go to his room and act out against his mattress. He used to be in the bottom 5 percent in stature and weight, and now he is in the top 30 percent. He tans from being in the sun, but he used to stay pale.
He holds onto me when we are in unfamiliar places. He waves bye-bye when I drop him off at the respite home where he spends most of his time. He loves his room there, and he is the favorite resident because he is so affectionate and trusting. He welcomes his sister and mom whenever they visit him.
He lets me calm him down even when a doctor has to examine him. Even when he broke his nose and needed to have it examined, or when he had to have stitches in his head, or when he gets general anesthesia for dental treatment.
Dozens of therapists, teachers, and assistants have worked with him through the years, and he must be one of the most hugged 14-year-olds around. Three masters theses have been based on him as a case study. At least four people have chosen their careers after working with him. He has made life meaningful for everyone who has known him.
He is the bravest and most trusting human I have ever known. He has a smile that could melt glaciers. My greatest sorrow in life is that he has such limited means to express his personality.
I never knew that love could be so overwhelming and so inadequate, because I failed to save him from the abyss. I have lost count of how many times doctors have simply shrugged at his condition, and I have gotten used to MRIs, genetic tests, EEGs, etcetera, that show no probable cause for his disabilities. I am used to people asking what his savant abilities are, as they assume that all people with autism must have one.
I have nightmares about unspeakable scenarios that I can not protect him from because I am gone, or ill, or dead.
I daydream that medical science will discover the missing enzyme, the broken metabolic pathway, or the marker that explains everything, and that my son will get one shot that clears up his nervous system. Perhaps it is hoping for too much, but if nothing else I owe him my hope, and my faith in him.
—Leif Knutsen; Oslo, Norway
The story of my daughter's autism diagnosis began a year before she was born.
My son, her older brother by 18 months, was diagnosed with a speech delay at about 14 months of age. He was social enough and a curious little boy, but there were no words issuing forth, and the pediatrician recommended early intervention.
He was speaking in spades within a few months of starting the intervention, and it was quickly discontinued. I concluded that I had overreacted, and so begins the story of my daughter's diagnosis.
When she appeared to have a speech delay, I thought, "I'm not overreacting this time. It's just like her brother. I'm not worried." When I noticed her fixation on particular toys, carrying them around for days at a time, I thought, "Huh. It's like her brother's security blanket, but she uses a toy. Hers just changes from time to time." When her first steps were in a perfect circle on our little bathroom mat, which I observed in the mirror while I was brushing my teeth, I thought, "That's talent. This girl needs no straight lines." I had no idea how correct that presumption would turn out to be.
I, like thousands of parents who harbor dark suspicions in their heart of hearts but aren't ready to say them out loud, Googled "autism." I found as much to dissuade me as I did to confirm my suspicions. Did she say any words? Well, yeah, she said words. At 2-years-old, words are often disconnected and disjointed. Did she make eye contact? Sometimes. Did she seem interested in other people? When she was hungry or needed something, she certainly seemed interested in me.
Then one day came the play date that changed it all. Every parent of a child on the spectrum can tell you about that play date. You watch the other kids, then you watch your kid. Your friend's kid is rolling a dolly around in a stroller, calling for Mommy to watch. Your kid is sitting silently in the corner, holding a toy screwdriver. When she gets up, it is to tread the border of the rug. Suddenly you know that your kid has autism. The diagnosis is but a formality.
Then begins the real journey into "Where on the Spectrum Will my Child Fall?" The diagnosis is nothing, absolutely meaningless, compared to the horror, anxiety, and sheer panic of "Where on the Spectrum Will my Child Fall?"
When a doctor hands you a list of suggested therapies and times that should be allotted to said therapies, you add up the hours in your head and say, "This is 80 hours a week." The doctor says, "This is what's suggested." The underlying suggestion is that if you want your child to fall on a more acceptable place on the spectrum, you better get on the horn and start these therapies. Pay no mind to the fact that you secretly feel like you are torturing your poor, darling child. Pay no mind to the fact that the therapies don't seem to really gel with your child.
If you play the game of "Where on the Spectrum will my Child Fall?" you win or you die. (No essay about autism diagnosis is complete without a Game of Thrones reference, in my opinion.) No one dies, of course, but it's an apt metaphor: The feeling that your child will end up on the "wrong" end of the spectrum feels like a little bit of death.
I think my favorite day of the long journey of my daughter's diagnosis was the day I realized that she was not an Aspie, nor one who would "grow out" of autism, nor "verbal but quirky." When I came to the end of the game of "Where on the Spectrum Will my Child Fall?" and realized that we were way farther down on that spectrum then I had ever thought, a burden was lifted off my shoulders. I didn't need to play that terrifying game anymore. I had my answer, and now we could all move forward with helping our girl to become her best self. We finally knew what we were up against.
We have come to a wonderful place where we know who our girl is. Her style of communication is uniquely her own. It doesn't involve a lot of speech or writing, and often her communication doesn't even involve another person. More than anything it involves art, which was a surprise to us. Though she sometimes expresses frustration with a world that doesn't always understand her needs, her artwork is full of color and joy. It communicates to us who our daughter really is and answers the question, "What is going on inside that girl's head?" There's a nutty sense of humor and so much love in there. She has a website that shows some of her drawing and clay work and photography, and animation. (It's here, for anyone interested. The inside of her head is a neat place; you should go explore it.)
Our journey of our daughter's diagnosis will never end, because children grow and learn and change. If you accept a "diagnosis" as a static point in time for your child, if you accept that a diagnosis comes from a doctor or clinic and not from your own knowledge of your child, you will never really know your child.
So, diagnosis is a daily event in this household. My daughter was diagnosed with autism 12 years ago, but what that really means is anyone's guess.
—Sharon Castellanos; Austin, Texas, USA
Yesterday was an extremely hard afternoon and evening. My oldest was not himself and I was hating what autism does to him at times. He had trouble using his words and anger was overcoming him; his sensory needs were high.
His siblings are too little to understand when this is happening, and it's not always easy to comfort them through the process of Autistic Child Getting Regulated. Unfortunately, days like that happen. It's always unexpected and I may never know what events or variables have triggered it. I go to bed begging for God to help me know what my child needs, and hope it's not a new long-term phase. In our case, I throw in a wish for no night terrors. Stress triggers them and can keep him up, crying and screaming. Luckily, these kind of days are not a regular occurrence anymore; today, he woke up happy and calm.
Refreshed at the lease of a new day, I thought of the less-experienced and more youthful version of me. The me before autism and how she might have expected (unrealistically) for my 4-and-5-year-olds to sit still for an hour in the heat while we watched my 9-year-old have a swim lesson. The phantom version of me might have worried about what other parents thought or said about the way my children acted. I might have developed anxiety over this concern and started sweating at the process of trying to force little kids to behave in a way that others around me might expect.
That version of me might have also worried that people around me would snicker or glare at the boy in the pool who got corrected more, tended to swim into another lane, or splashed others inappropriately. I may have heard others around me whisper: "What kind of parents does HE have?"
Autism has taught me not give a damn what people around me think.
It has taught me to know better, and that there are two people on earth I can't change:
1. The person who smiles at the love I have for my kids. (He or she can usually see something different in my exchanges with them, and notices an extended level of patient guidance.)
2. The person who judges because they simply have no idea or enough life experience to allow for understanding.
Today, I am happy for what I have learned. I had the chance to allow myself to bask in the joy of a boy swimming who didn't splash other kids a single time. He worked so hard to correct himself on the strokes [the group] worked on without splashing the coach. He never got out of the pool to sit on the cool deck, refusing to swim like he did during other sessions. He lost his fins and still walked himself over to the lane and got in. He tried his best, and even if he looked different than the kids and he complained about being last, he kept going. THIS IS A GREAT SWIMMING DAY. These kind of days make my eyes brim with tears of joy while I sit on the bleachers next to parents that are usually texting or reading.
I also had the chance to set realistic boundaries for my two little ones who would have to wait an hour for the lesson to be over. I enjoyed seeing them seek out other kids their age to initiate play under a tree. My girl kicked off her shoes and pressed her toes into the dirt. I watched her play with branches and leaves while my iPad sat unused in my lap. I know from autism what a beautiful thing it is to form friendships easily in ways my oldest is still learning how to do.
I am glad autism has shown me to capture such simple little moments, soak them all up, and hold them tightly. Tonight, I can thank Him for this evening. I will go to bed smiling at the memory of hearing my kids' laughter under the arches of an old olive tree. I will grin at the image of those long, sun-kissed arms reaching up and over the aqua water in perfect rhythm. It was a great day. Without autism it would have been just a regular day.
I picked up the boys like usual, right at 3 p.m. I anticipated a happy report about boys that tried hard all day at school making good choices. I would normally drop off my oldest boy (the 9-year-old with high-functioning autism) at chess practice. I planned to make cupcakes with my neurotypical kids (ages six and four) for snack time. It's always a good idea to squeeze in some special time with them. They do a lot of waiting and watching because someone else in the family needs much more from me on a regular basis.
I knew immediately something was off when my oldest climbed into the passenger seat. His energy was off. He didn't respond when I asked about his day. He quietly asked to skip chess. This is not unusual, but I noticed there was something about his demeanor that was different. I pulled around to a nearby parking spot and noticed that his heart was beating fast and his breathing was heavy.
"Are you okay?" I asked, brushing his hair away from his forehead.
After several attempts to hold in his feelings, he finally said, "I'm feeling blue. I hate autism. Why do I have to have it? Why does it have to be me?"
I have never been in a physical fight with anyone. No one has ever hurt me with a kick of a boot, but in that moment I felt like the Hulk had kicked me in the sternum. It hurt so bad. I knew one day that question would come, but there was no preparing for it. It's one thing to have my own grief to overcome, but his grief and new understanding seemed, at the moment, almost unbearable.
He put his head into his hands and began to cry, folding over into his lap. I tried to catch my breath so that I could help him through this. I reminded myself that I needed to let him be in this moment, and not try to fix it or push away the feelings. Let him be mad about it like I was when I learned about it just three years ago. Let him have time to sort out those feelings and then communicate. Listen. Empathize. Then help him move on.
I put a hand on his back and drove away from the school. There would be no chess practice today, but by golly there would be cupcakes.
Keenly aware of the two happy children chattering away in the back of the car, I whispered to my sad son that it would be best to talk about this at home in private. I wanted to be sure he had my full attention. When we got home, he did not resist the notion and did as I suggested. That meant a lot to me; it is the kind of relationship I have always hoped to have with each of my children—I hope they tell me what they feel. I want to be their safe place to talk about things, and he was doing just that. What a wonderful, fabulous moment to share with him. A hard one, but important and precious.
I got the television arranged for my two little ones and then found my eldest laying in bed with swollen eyes and a somber face fixed on the ceiling. I nestled in next to him and just held his hand. He didn't have a lot to say, and nothing specific seemed to have happened. I felt an inspired wisp of words come to me that were genuine and strong. I told him of the important things that would come in his life despite autism, and that autism would not get in the way of him having a happy, full life. Some things might be harder, but many things would be easier and give him opportunities. We said a prayer together and both wiped away some tears.
—Liz Fuller; Chandler, Arizona, USA
Editor's note: This response is from John Robison, author of Be Different and Raising Cubby, a book about his and his son's autism spectrum diagnoses that Rosin discusses in her piece.
I do think that the elimination of autism, Asperger’s and Pervasive developmental disorder not otherwise specified (PDD NOS) as separate DSM categories will have a big impact on some school districts. Many school systems have defined sets of services associated with DSM diagnostic labels. If the familiar labels disappear, how will they know what services to provide? The fact is, most autism services in America are provided through our public schools—not the medical system. By changing the autism spectrum definitions we have thrown a huge wrench into these works and I think it will take years to sort that out.
The changes to DSM-5 do reflect the current belief that autism, Asperger’s, and PDD NOS are all points on a curve, and a therapist cannot distinguish one from the other in an adult. However, eliminating the individual codes for DSM-5 is likely to prove hasty and ill-advised. Right now, new brain-imaging studies suggest that we may soon be able to recognize different autism spectrum subtypes like Asperger’s through image analysis. In addition, research into other biomarkers may well bear fruit in the next decade.
For myself, I don’t mind being an autistic person as opposed to an Aspergian person. But I recognize that calling myself autistic may be confusing to other people because the autism spectrum is so broad. A person might meet an autistic person who cannot speak, and then encounter a very precise speaker like me—also autistic. What is he to think autism is, given that observed dichotomy? The use of one term for a condition with such broad affect is indeed confusing to the layman.
That said, I am fine calling myself either thing, or nothing at all. Frankly, I like to think I am more than “just” autistic. I am a successful engineer, auto restorer, writer, photographer, and family man. Okay, maybe I am more-or-less successful at some of those things, but the point is, I do them all, and none are 'autism.'
Moving on to Rosin’s interpretation of the story I tell in Raising Cubby:
Robison, who grew up feeling under siege in a deeply dysfunctional family in the 1960s, champions the label and the tribal protection it offers in a “neurotypical” world that he is sure will always stigmatize and misunderstand people like him—and like his son, Jack. Yet Robison’s new memoir, Raising Cubby (that’s Jack’s childhood nickname), turns out to offer vivid evidence that just the opposite is true. The world his son grew up in is welcoming in ways that Robison curiously fails to recognize, even as he recounts them in great detail.
It’s interesting that she sees my story in this way. It’s certainly not how I perceived events as they unfolded. Yet looking back, in some respects I agree she is right. My son was welcomed in the home, the school, and the community in innumerable ways in which I was not (as a child). I do not think the world will always misunderstand and stigmatize people like me. In fact, I work very hard on government committees and in private groups to change that situation and I have great hope for success.
However, while some parts of society my have accepted my son, I believe the actions of the district attorney in Raising Cubby show that there are still people who will try to twist the unwittingly inappropriate actions of a neurodiverse teen for their own self-serving purposes. This is a far bigger problem today that it ever was in my youth. We have criminalized so many things young people do, and we ruin lives with the resultant prosecutions. The United States leads the first world in the percentage of its citizens incarcerated or on probation. And it starts with teens like my son.
What Rosin takes away from my depiction of Cubby’s school experience is a generous, and somewhat rose-colored view that feels at odds with my memories:
In his earliest years at school, when Cubby had trouble reading, his teachers thought he was slow, or stubborn. But a school psychologist helped Robison and his wife pressure the school into having him evaluated. After that, he was in attentive, therapeutic hands. His parents got him into the Yale Child Study Center, where experts closely observed him and analyzed his academic gifts and challenges. He moved to a Montessori school, where he felt “happy and safe” and “excited about going to class.” Harry Potter turned out to be an opportune cure for his reading troubles. As middle school ended, Robison built a house in Amherst, Massachusetts, so Cubby could go to a good public high school. He struggled with the academics, but his parents spent every extra penny on tutors, who helped him with the disorganization that derails many kids like him. Meanwhile, in the social world of public high school, Cubby was more than accepted. His ability to attract other kids, Robison writes, was “wonderful to behold.” Even more amazing, he managed to land himself a girlfriend at 14, an age when Robison “had only dreamed of holding hands or kissing a girl.”
If only that paragraph were true! There were a few helpful people in the public school system, but on the whole, our experience with the South Hadley and Amherst systems was a nightmare. Never in my wildest dreams would I say they helped Cubby thrive.
He absolutely did better at Montessori, but that program ended at fifth grade. And despite spending thousands on tutors, my son’s executive function remains a problem even today. It’s effectively prevented him from completing college even as he is about to turn 24.
I wish with all my heart that this situation were different, but despite all my pride, hope and effort, it’s not. My son has many gifts, but he is also disabled by some of the very traits that make him unique and special. That is the hard reality of autism: The things that make you wonderful cripple you, too, and often at the same time. It’s a way of life I know all too well, despite my commercial successes.
Perhaps not surprisingly, Jack seems to have emerged into young adulthood sharing none of his father’s defiant need for tribal solidarity. In 2011, the same year Robison published an advice book for fellow Aspies called Be Different, his son took another route into print. Jack, then 19 and at college, ended up in a front-page New York Times article that described his tender relationship with a female student, also diagnosed with Asperger’s. Far from a portrait of barricaded otherness, the story highlighted a quest for mainstream happiness, rooted in human communication and connection.
Hopeful as that article was, the relationship it described foundered in the summer of 2013. My son is still living on his own, but he’s doing so alone as he figures out what comes next. School has not worked out so far. He has a great many ideas for inventions that may change the world, but making dreams real is a lot of work, as he is discovering. I have great confidence that he will succeed, but I cannot begin to predict the path.
As for myself, the words I wrote in Be Different remain true: Our differences can indeed be key to our success. But the challenges of autism remain real too, even for those of us who have few if any visible disabilities.
—John Elder Robison