About a boy

Movies and memoirs give us a romantic view of living with a child with Asperger’s but the reality is very different

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Photo by Mike Carreiro/Gallery Stock

Photo by Mike Carreiro/Gallery Stock

Kent Miller is an English teacher in Shezhen, China. He has written for The Guardian, Proto magazine and Nintendo Power.

In high school, my son Carson developed a fascination with Fred Phelps, the way a more typical teenager might obsess about the Marvel universe or The Vampire Diaries. Phelps, who died on March 19, was the bilious founder and leader of Topeka’s Westboro Baptist Church, infamous for setting up godhatesfags, a website dedicated to ‘opposing the fag lifestyle of soul-damning, nation-destroying filth’ and for staging noisy protests at the funerals of fallen soldiers and plane-crash victims.

After Carson read about Phelps on Wikipedia, the man’s name quickly became a joke obvious only to him. ‘Fred Phelps,’ he’d sing out, grinning mischievously. Apparently, Phelps’s congregation had a funny name, too – ‘Westboro Westboro Westboro,’ he’d repeat. Over and over.

Carson has high-functioning autism – otherwise known as Asperger’s syndrome – and he would recite these jokes, such as they were, dozens of times a day. For weeks on end. Since he had no real friends, just some kids in his special-ed classroom whom he’d talk with fitfully, I was his sole audience. Carson’s mother and I had divorced when he was nine, after which Carson went to live with her in California. But he returned to me in Seattle a few years later, when he was about to enter the eighth grade, and I was to embark on life as a single dad.

Aspergians, like others on the autism spectrum, are socially awkward: they have trouble understanding other people and can find it overwhelming to look someone new in the eye. They often persevere with subjects and activities; given half a chance, Carson would bend my ear for hours about Australian Aboriginal linguistics, Mayan aquaculture, ancient Chinese sailing technology, and other subjects I’ve no interest in.

Sometimes very nice people tell me that Aspergians are quite special. ‘Didn’t Einstein have Asperger’s?’ they ask. They press upon me books by Temple Grandin, a livestock professor who has made a second career writing for The New Yorker, or John Elder Robison, an Aspergian who has a wife and kids and an eclectic career that has included building guitars for Kiss. While I admire Grandin and Robison, who live independently and who have found ways to get along with people in everyday life, hearing them held up as examples of what Carson might achieve saddened me. He was not progressing. This went far beyond being a moody teenager, which Aspergians are no more immune to than your neighbourhood goth: in all his time with me, Carson never formed a friendship.

It was incredibly difficult to get him to do things he didn’t want to do, such as his English homework, which he claimed was boring. Nor would he try anything new. He would never have done anything in the least out of his routine if I hadn’t taken the lead. When we went camping – the Southwest, the East Coast – he showed no interest in setting up the tent or cooking or cleaning. Instead, he’d tramp about the campsite, regaling me with information about Han Dynasty sails.

Meanwhile, I consulted psychologists who specialised in Aspergian teenagers. I took him to social-skills classes for Aspergians. I hired nursing students to be his companions. Even with insurance co-pay arrangements, none of this was cheap – and that doesn’t include the time I took off work. Eventually, I lost a contract job with a software company because I left work early so often. And then I spent endless days pleading, bribing, cajoling and yelling at Carson to do his homework, take out the trash, stop going on and on about Aboriginal linguistics.

Boredom, anxiety, exhaustion and anger were constant companions. Which is not to say that Carson couldn’t be sweet, and wonderful. Once, for example, when I was broken-hearted over being left by yet another girlfriend, he baked me a chocolate cake. But such lovely moments were few and far between.

There was something else, too. When you are raising a child with a developmental disability, if you are not careful, you can get a little fatheaded about it. Everyone tells you that you’re a wonderful parent. There are no end of books and magazine articles and movies telling you that you stand shoulder-to-shoulder with legions of Autism Heroes and Mother Warriors. And while I wanted to help my son, there was part of me that badly wanted people to say, ‘There goes Kent. God, what a great father. What an amazing guy.’ It clouded my judgment.

Daily Weekly

One day, my son came home with the news that Fred Phelps – or, to be exact, his followers – were coming to protest at his high school. Carson attended Garfield High, an ethnically diverse school with a rich tradition of arty types – Michael Jackson’s producer Quincy Jones and Jimi Hendrix were both alumni. Garfield strongly supports lesbian, gay, bisexual and transgender (LGBT) students, which doubtless drew Phelps’s ire, but probably of greater interest to him was its proximity to Seattle’s major TV stations.

At first my biggest concern was noise. Like many people with autism, Carson hates loud, unexpected noises. Something as innocuous as a vacuum cleaner being switched on can make him clamp his hands to his ears with pain. And, as surely as the earth spins, there’d be plenty of noise when Phelps’s minions showed up.

By this time – spring 2009 – the roles played by all parties involved in the Westboro roadshow were as familiar as the squabbles in a seventh-season episode of Friends. A handful of Westborians would scream and wave placards; they’d be outnumbered by reporters and then ringed in by stone-faced cops. Given Seattle’s colourful liberal politics, I had no doubt that a boisterous crowd of counter-protesters would be on hand.

Like many intelligent teenagers, Carson is
hyper-opinionated. When Obama and McCain ran for president, he lectured frat boys outside Seattle’s nightclubs on what a terrible president George Bush was

In what follows, it’s important to realise that my son is African-American. The brutal fact is that in any sort of dispute, he was far more likely than any white kid to be suspected, get arrested, go to jail. Yet he was oblivious to these ugly facts. As long as he lived with me, in a fairly benign and tolerant city, I could protect him. Somewhat. But I couldn’t watch over him my entire life. One day he might find himself in a place that was a great deal less tolerant of an oddly-acting young black man.

Besides, Carson is more than intelligent enough to get into trouble. When he’s excited about something – which is often – he talks faster than any character actor in The Social Network. Like many other intelligent teenagers, Carson is hyper-opinionated. During the fall of 2008, when Obama and McCain were running for president, Carson’s brainstorm was to go and lecture the frat boys waiting in line outside Seattle’s nightclubs on what a terrible president George Bush was.

‘Don’t do it Carson. Please don’t do it,’ I’d beg him.

‘Why not? I have the right to say whatever I want.’

‘Sometimes it’s better to just, you know, not say anything.’

‘But George Bush is evil.’ And so it went.

I’d feel my breathing become quick and shallow, and a tenseness would spread across my shoulders. I’m gonna have a coronary, I’d think. But I’d keep trying. I’d tell him that people didn’t always act with reason.

‘They should,’ he retorted. ‘Feelings are not efficient.’

‘Let me finish. OK? Can I finish? This is important.’

‘So is behaving ethically. Which is what I will do if I tell people about George Bush.’

‘Listen. There may be a fight. Someone may hit you.’

He was pacing quickly, but then he stopped and held up an admonishing finger. He didn’t look me in the eye, though. ‘That would be morally wrong,’ he said.

In the years since then, I don’t think much has changed in the way people talk about autism. In spite of cogent arguments from campaigners such as Emily Willingham, many parents continue to believe that vaccinations cause autism. From publishers there comes a never-ending stream of memoirs by parents proclaiming a connection, a breakthrough, a success, however halting, with their child. There's Jenny McCarthy’s Mother Warriors: A Nation of Parents Healing Autism against All Odds and Ron Suskind’s Life, Animated: A story of Sidekicks, Heroes and Autism.

The Boston College sociologist Amy Sousa has studied 33 such memoirs and finds the dominant self-image of these writers is that of ‘warrior-hero’. Regardless of whether or not most parents of children with Asperger’s are able to live up to the hype, this is quite a swing from the old notion, notoriously championed by the Austrian-born psychologist Bruno Bettelheim in the 1960s, that emotionally distant ‘refrigerator mothers’ caused autism.

Had I been more aware, I might have noticed that in the days before Westboro’s arrival, Carson had stopped joking about them. The night before the protest, he was nervously pacing the house. Finally he admitted to being scared about what might happen the following morning. I had him sit on the couch next to me and held his hand while we talked. Carson worried that he might be caught in a clash between Westboro followers and counter-protesters. Specifically, he worried that people from the Westboro church might single him out because he is black.

His teachers and I had talked to him about what might happen. But the high-school rumour mill has a life of its own. For someone with Carson’s limited social skills, it exerted even more sway than usual. He’d heard a rumour that the Westboro people made money by using racial slurs to goad black people into assaulting them. Then they’d sue and collect lots of money.

In life, Phelps always denied that he was racially prejudiced, and perhaps he wasn't. But when you launch a website called godhatesfags this is rather too subtle a point to convey clearly. Intellectually, Carson knew his history. He knew about Jim Crow and Emmett Till, and the back of the bus. But this was the first time that he had felt personally threatened by potential racists. It was another significant step in the loss of childhood, and it was made especially poignant because he was giving voice to a fear that I, as a white man, would never experience myself. I can read all the books in the world about racism, but I'll never know first-hand what it is like for its victims. That night, Carson did. He worked his mind over the rumours.

‘Maybe they’ll come after me because I’m phenotypically African-American,’ he said. Well in that case, I told him, he might be better off staying inside the school all day.

‘Oh! I wouldn’t go anywhere near them. But what about when I have to get off the bus?’

I explained that the school would not allow any trouble, and that there’d be many police there too.

To my ears, Carson's laughter was the best music in the world. Fred Phelps and his gang had bumbled into making my son a little braver

We discussed in great detail which of his classrooms would offer the best view of the protesters, and whom he could talk to if he had any worries. Together we made sure to pack a sponge ball in his backpack. If he felt stressed, he could squeeze it. When Carson went to bed, it struck me that this evening had been one of those special moments when the veil of normality is punctured, allowing us to draw closer.

The next afternoon the door slammed emphatically as Carson rushed in with more-than-usual gusto. He was incredulous. ‘Dad – they said we were all baby-eaters!’ And: ‘That just doesn’t make any sense, saying Obama is both a gorilla and a Nazi!’ He breathlessly rat-a-tat-tatted his surprise at the day’s events: how puny and churlish the Westboro gang appeared, the billowing masses of well-behaved counter-protesters, the zestful political discussions with classmates and teachers, the unexpectedly tranquil journeys to and from school.

And then he laughed, gales of bright, pealing laughter. To my ears, that was the best music in the world. Fred Phelps and his gang had bumbled into making my Carson a little braver. And for that, I am very thankful. Perhaps, if this were a typical magazine article, I would say that this was a breakthrough, that after that he started making friends, or at least acting a little more independently, or confidently. But that would not be true. My son’s brush with the Westboro protesters was a high point of his ability to cope with the world.

Lately I have noticed books such as Jennifer Elder’s Different Like Me and Jennifer Cook O’Toole’s The Asperkid’s (Secret) Book of Social Rules, which promise to deliver guidance to young Aspergians. I don’t know who reads these books, but even if they’d been available in 2009, they would have been no use to Carson: he simply wasn’t interested in getting along in the world.

Sometimes I wonder why Carson became obsessed with Fred Phelps. I wonder if, in Phelps, he sensed a kindred spirit; not an Aspergian, perhaps, but someone who absolutely did not care what anyone thought and yet had been successful in bending those around him to his will. Then again, Carson detested homophobia. So maybe the pull was his very human fascination with evil.

All are possible explanations. That I have no idea which is most accurate only goes to show that a person with autism is just like any other person, in that there’s a lot you’ll never know for sure. Carson is now 22 and lives with his mother in California. I don’t know what will become of him – if he’ll become independent and happy, or not. However, I do I know that if I keep wishing and hoping for him to ‘get better’, I’ll go crazy.

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Comments

  • Miles Voltaire

    "And then I spent endless days pleading, bribing, cajoling and yelling at Carson to do his homework, take out the trash, stop going on and on about Aboriginal linguistics." - I'm fairly sure that even with a 'normal' son that you'd do the same things to try and get the homework and trash sorted.
    Having Asperger's is not, as you have found out, something which you can throw money and/or treatment at in order to make it go away. Asperger's is not an ailment - it's a lifestyle. I learned that the reason why I wanted the same foods each day, why it had to be one brand of tinned stew and not another, why I have an unholy obsession with skill cranes - was not something I could happily take a drug for and it would disappear. What would come in its place?
    I think the crux of this article for me was that a father felt distanced from his son because of their difference in outlook and desire for experiences. You will never, ever feel the same way about something as an Aspie does. Trust me on this. There's something that tickles round your brain, like the featherlight touch of a cat's paws, the kind of pleasure that you can't describe because no-one else will ever quite feel the same way. And the subject could, indeed, be anything. But here's a tip: Try combining your activities with those interests. He likes linguistics? Get him to examine phonemes in his English homework. You hate Chinese naval history, but enjoy walks? Go to a large and roomy museum. But understand this: The person is the obsession and the obsession is the person. You cannot remove one from the other - there is nothing else that will fill them, at least for this moment in time. And, obsessions can be useful. An obsession with books got me work in libraries, and an Aspergic love of precision got me a job at picking out infinite detail on bibliographic records. Help your son to become the adult he is, not as you would need him to be. You cannot mould a person whose dreams , writ large, are their moral core and their desires and their passion, all at once.

    • Rangiora

      Your comments about the writer struck me too, and the rest of your response is useful.
      What I would add is that there's no 'normal' vs 'aspergers': it's a continuum. My son is a fair way along the scale towards the aspergers end, and I am as well, though not as far as him, and he not as far as the subject of this article. Pity his poor mum, having to live with us. But she loves us both, accommodates herself to our kind of normal, and appreciates our good points. The point is, which you make, is that you can't fight aspergers - and also the very term 'aspergers' is an unhelpful label. I prefer 'eccentric' which may be old fashioned and non-clinical but is a descriptive word that does capture some of its nature.
      Anyway socialising is much over-rated. Most people are pretty bright individually, but as soon as you put them in a collective they turn stupid, and one of the tragedies of human life is that most people are obsessed with joining collectives. My son and I, we just go our own way. It's not lonely at all. And as for my wife and his mother, she covers for us and learns from us, and we're a fine trio of eccentrics with a collective epicentre who go off individually in all directions.

      • vcragain

        Oh how right you are about the 'groupie' thing with humans - THAT is why I am a loner - always love an individual who I can get to know ALONE without the burden of having to 'fit in' to whatever group they belong to. I began to wonder if I had Aspergers several years ago - I was always a bookworm and make friends only rarely and never hang onto people. Basically I care about everybody but actually LIKE very few people !! I think 'eccentric ' explains so much of this and is really what most unusual people really are - why is it only 'normal' to be a 'fitting in' groupie type ? I always maintain that that causes people to give up their independent ideas and lose their identity - very important to me - I think this subject is grossly exaggerated and I suspect a lot of 'Autistic' kids may be getting labeled by over-zealous 'educators' or Doctors when they really are only eccentric kids ? Maybe this should be looked at again - we also DO have to beware of the Medical establishment and Big Pharma, who have their own reputations to build and axe to grind !!! The truth is that most of our geniuses thru the ages have been thoughtful, eccentric loners - being Introvert has a lot of pluses !!!!

      • A Amiri

        "Anyway socialising is much over-rated. Most people are pretty bright individually, but as soon as you put them in a collective they turn stupid..."

        It is no measure of health to be well adjusted to a profoundly sick society. -Jiddu Krishnamurti

        We only get along with and tolerate each other. Even lovers have to compromise... while the ordinary thinking goes on that we are living in a paradise while in reality we are living in limbos of our own making or those made by our fellow human beings!

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  • Pawn666

    I am noticing a new phenomenon on the web in which writers create public confessional style articles in a diary format. Most recently the one that comes to mind is the woman who documented having an abortion. As a somewhat private person, I find this strange, to know details about writers lives. Thanks for sharing I guess.

  • James Glidewell

    "When Austin went to bed..." - who the hell is Austin?

  • Michelle Sarabia

    As someone who also has Aspergers, (if you are a DSM-V hound, HFA, so shush) ... I find this article an amazingly perfect illustration of some of the key elements that most NTs struggle with when it comes to raising someone "on the Spectrum" - modeling proper social behavior in a way that people who are ASD can learn from. I am sorry that the supposed professionals you consulted failed in helping you and him with this, but never stop being hopeful. Thinking that someone in their late-teens has the full definition of all the skills and awareness they will ever develop is a common error, and perhaps that is why friends keep shoving books you don't want to read in your face. Meanwhile, I suggest subscribing to pages like the Autism Discussion Page on FaceBook, and learning more about how to enter his world. Only by truly entering his world can you guide him in learning the skills he needs to survive in yours.

  • Andrew McIntosh

    Who cares for the carers? People in the position of having to care for others are either lauded saints or condemned ratbags. They're hardly allowed to be just people, with weaknesses and strengths of their own.

    And it's never about them. It's always about the people they have to care for. The parents, grand-parents, siblings, offspring, lovers and others who have to care, full time, for people with needs are always the side issues. Especially in their own minds, always pre-occupied with the person/people they have to care for.

    What I got from this article is that someone loves his son deeply and wants him to survive and thrive. I hope that's the case, the portrait here is of a principled young man. I also hope that Miller gets, even if once in a while, the compassion he needs, too. For the same reason.

    And eff The Westboro Baptist Church misery merchants. Carson Miller was right and proper to laugh at them.

  • John Elder Robison

    It is hard, raising a kid who's different. It's also hard being a kid who's different. Sometimes I feel similar things to what you write when it comes to my own Asperger son, ho is now 24. Other times I remember how much I changed between 20 and 50, and I realize he may be just fine.

    I wish you both the best of success