The New York Times Sunday Magazine last weekend included a moving article about the relationships between a group of people and an autistic child, now adult, who is functioning much better than any would have imagined; while the New Yorker published the interview with the father of the Sandy Hook killer, who also bore an autism spectrum diagnosis, but whose outcome, as his father said, could not have been worse. Before we go any further, a word of caution: I know next to nothing about autism. One of the reasons to become a psychoanalyst, however reluctantly, was to gain knowledge about the human condition. I hope I have gained some measure of that. I have not treated, nor have I known well anyone with an autism diagnosis. I know, academically and in the vernacular, what it means. It has become the diagnosis du jour – like multiple personality in the 80s and 90s, and Attention Deficit Disorder and the 90s and 00s, it has become all the rage.
As the New York Times article points out, 1 in 54 males is currently being diagnosed with an autism spectrum disorder (boys are six times more likely to be diagnosed than girls). I remember in 1990, working in a tertiary care facility and having someone referred to us for a diagnosis – the parents had found no description that was accurate – and one of my fellow clinicians met with the boy and tested him and discovered this arcane syndrome – Asperger’s – fit. It was a syndrome none of us had heard of. And now it is widely known to the lay public. My, how times have changed. And it is a mystery to me. I first heard of it being treated by the Lovaas group at UCLA. There they treated these kids who would not make contact by offering powerful behavior interventions – feeding them cheerios when they engaged in prosocial behaviors and withholding food otherwise. They were the group that had the most success with this very difficult to engage – walled or sealed off kids – who lived in a world of their own. I had a friend in graduate school who worked with that group and one thing that she related to me – as a kind of secret – was that, in addition to the “positive” reinforcement of the cheerios, the group was also taught how to hit (punish) the kids for doing undesired behaviors – they were taught how to hit them in ways that would not bruise so that no one would know that they were hurting as well as feeding them. I don’t, of course, know if this is true or not, but I remember recoiling at the idea that children were being treated so inhumanely.
The current book on autism, at least most broadly, takes it to be a mysterious syndrome with uncertain, but likely biological causes. Autism generally is associated with poor intellectual functioning, and Asperger’s was the exceptional case where it was seen in kids with normal intelligence. But the new Diagnostic and Statistical Manual, DSM-V, proposes Autism Spectrum Disorders, and has done away with Asperger’s as a category. And the treatments continue to be largely behaviorally based treatments – often parents hire our undergraduate students to closely monitor the functioning of their children and to reinforce desired behaviors – presumably a treatment based on some variation of the Lovaas technique – hopefully without the surreptitious hitting. I have a friend who is a child analyst who has had success connecting with autism through analysis. Researchers have also made the case that analytically based interventions can help people with autism.
The New York Times article, Animating Owen, written by Ron Suskind, the father of the boy who has had such a remarkable developmental arc, relates the importance of Disney movies in the boy’s recovery. The boy has an older brother and initially developed normally and then, like a third of kids who are diagnosed with autism, his development went south. He lost the ability to speak and went from a verbal and engaged kid to one who was severely withdrawn. The father’s pain at losing his child was perhaps most poignantly portrayed when he described not being able to bring himself to watch the videos of the happy child his son had been before things went so terribly wrong. So Disney movies became the key to getting back out and on track. It was a painful and very difficult track; the child obsessively played Disney movies over and over, sometimes rewinding and playing a particular scene, or even snippet of dialogue again and again.
At first the repetitive movie watching just seemed an annoying autistic obsessive symptom, but then his Mom noticed that he was saying something that sounded somewhat like the words to one of the songs in the Little Mermaid, and the family watched that scene together. Then slowly and with difficulty, he was able to play one of the parts while a family member played another part, and an interaction began to take place. This play acting led, slowly, to being able to talk in the voices of the characters, at first mimicking them precisely, but eventually talking with his own words. Ultimately it led to the ability to reflect on the play acting and eventually to being able to talk about how the movies were constructed. And some of the observations about the movies attributed to the child were remarkable; particularly that it is the sidekicks who do all the work and have all the most interesting emotions. The heroes just kind of bumble along (see my similar observations about Star Trek). And the kid’s observation that he is a sidekick. And that this is a strength, not a weakness.
The Andrew Solomon article about Peter Lanza, the father of the Sandy Hook killer Adam, was also quite poignant. The newspaper articles that I read suggested that the Sandy Hook groups were opposed to the article, saying that it was time to move on with healing and that it would open up a wound. As a distant observer, I found the story to be very human; filled with guilt, regret, and remorse and telling a story that acknowledged the heartbreak for all. At the center is the story of a mother choosing between what will make the day livable (OK, don’t eat your vegetables) and what is in the long term best interests of the child (don’t come out of your room until you’ve done your homework).
Solomon clarifies that the murders cannot be explained – but what the picture that he paints of the estranged father and the mother who is struggling with an increasingly demanding son evokes is sympathy – as does the story of the students and teachers who were killed. What binds these stories together is the difficulty of reaching kids who are as walled off from the world as these two. It is expensive, both in money – Suskind estimates that it cost his family $90,000 per year in schooling, psychotherapy, etc. to support his son and the autism organizations estimate $60,000 per year are necessary to provide adequate care, but the costs are also in emotional engagement. Owen and Disney were the center of the family functioning for the better part of 20 years. Raising a special needs child is tremendously taxing on a marital relationship. I can’t help but imagine that the challenge of raising Adam Lanza was one of the factors in the dissolution of his parents’ marriage. And our children demand of us that we work to create a space for them to become more fully human.
That last sentence in the last paragraph has gotten me in trouble with the reluctant wife. She does not see degrees of humanity, but expects that we are all, categorically, human. And she has the Declaration of Independence, among other documents, on her side. But I believe that we, as parents, provide love, education, medical and psychological care, nutrition and exercise not just to promote our children’s “normal” development, but actually to help them join a tremendous web that is our shared human culture. We are trying to provide the best possible platform for them to fully exploit what is available to them. This challenge, as difficult as it is, is hugely more problematic when the child is missing something that we take for granted – something like an interest in human relationships – something as debilitating as an inability to form words.
Suskind suggests that we can reach these kids – particularly through finding out why it is that they have chosen to get wrapped up in the things they have, to discover what these things mean to them. This requires an incredibly close and demanding attention – a sensitivity to the potential for an inner life in someone who can actively work to ward off the intrusions of those outside of themselves. The other thing that he suggests is that these kids, unlike us (though I think I share at least some of this with them) work from the outside in to construct themselves – using the blacks and whites of rules, the cartoon versions of how people function – to create a version of themselves, rather than working from the inside out – trusting our intuitions and feelings and senses to “know” how to move forward in the world. I think I would propose that most of us work in a dialectical movement back and forth between inside out and outside in, while some of us may be more comfortable – and in some cases more confined – to one end or the other of this range of functioning. My thesis is not that we should not focus on the behaviors of autistic kids. We should do whatever will help them engage more fully in the world. My thesis, and I think that of Suskind, is that we should also focus on their inner worlds. To trust that they exist and that they are working to be – or from the position of the reluctant wife – that they are human, and that we should work on figuring out how to be in contact with that humanity within them. Of course, this raises the specter of false hope. I think this would be a terrible thing - but I think the specter of no hope is even worse - even more difficult to labor with.
To access a narrative description of other posts on this site, link here. For a subject based index, link here.
To subscribe to posts (which occur 2-3 times per month), if you are on a computer, hit the X button on the upper right of this screen and, on the subsequent screen, hover your cursor over the black line in the upper right area and choose the pop out box that says subscribe and then enter the information. I'm sorry but I don't currently know how you can subscribe from a mobile device - hopefully you have a computer as well...
No comments:
Post a Comment