In my work with adults on the spectrum I help adult clients take a look at a big theme: avoidance.
Avoidance is a theme, but not a constant pattern. I've worked with many clients who, once they're interested in a task or problem, are the hardest workers I've ever known.
Yet these same clients may struggle with avoidance when it comes to everything from personal hygiene to buying Christmas presents. It's puzzling to those around them, and even more puzzling to themselves. Why can other people seem to "get it together" and "buckle down"? Even clients who are functioning well are plagued by avoidance that causes anxiety and schedule disruption: a three-week project is avoided until the night before, then powered through at the last minute. It's not as though the three weeks of avoidance were spent in blissful denial; rather, most clients describe an anxious, mental circling feeling that leaves them feeling dread. So why not just approach the task earlier? Most determine that it must be a character failing. What other reason could there be?
This avoidance may be depression in disguise. Together, clients and I have come to understand that the autistic experience of depression often involves something other than the standard sadness we all associate with depression. The autistic version of depression is dominated by apathy, and a pretty profound inertia that can make it hard to approach tasks or even move physically. With our newer understanding of how depression's lowered dopamine levels impact motivation and drive, not just mood, (see http://www.sciencedaily.com/), this does make sense. Still, recognizing depression when it doesn't necessarily involve a subjective sense of sadness, can be tricky. And that means that typical treatments that address sadness can be not only ineffective, but irrelevant.
More effective, you might think, is addressing the behavioral side of therapy. The behaviors of getting up, showering, getting some exercise, etc, etc, etc. Surely focusing a bit on these aspects of healthy functioning is not irrelevant, but it's no fix, either. For clients on the spectrum, work is to be done for a purpose. A demand for purposeless work, or what feels like purposeless work, can actually exacerbate avoidance symptoms.
In my experience, clients on the spectrum who are dealing with avoidance as a powerful symptom of depression, are dealing with a symptom whose roots are in feelings of meaninglessness. Folks on the spectrum often find meaning through curiosity - once that door is closed, it's difficult to manage mood and motivation. In fact, it may be that the "special interest" phenomenon we see with autistic adults is the just the behavioral manifestation of the mood-altering function of learning. So treatment - at least short-term treatment - for depressive symptoms often involves learning of some sort.
If you have a loved one on the spectrum who is struggling with avoidance as a symptom of depression, it may help to know that many clients describe feeling confused and helpless as to why the problem of avoidance persists. While avoidance may at times look oppositional ("Why can't he just remember to take out the bins on Thursday? Why is it always my job?"), I rarely have found this to be the case.
Identifying the mood components of the behavior is crucial to understanding why the problem exists and how to begin solving for it. As we all know, nagging, reminding, lists, threats and even real-world consequences often are of no help.
As I work with more and more adults on the spectrum over time, it seems to me that it is crucial that mood is carefully assessed. This can be tricky - if the autistic adult cannot self-report sadness (either because it is not felt or not identified), and if many of the behavioral markers of depression are missing (no tearfulness, suicidality, missed work, diet changes, etc), depression can be, and is often, missed. If it is, the behaviors that keep depressive symptoms at bay will be intractable, and psychotherapy will devolve into going in circles. This can be especially demoralizing for couples.
If you or a loved one is looking for help, working with a clinician experienced in autism in adults is crucial, so that symptoms that present much differently in the autistic individual can be identified and treated. And above all, so the autistic individual can have the experience of being seen.
Many times in sessions with couples in which one partner is on the spectrum, much time is spent addressing an issue my wise Uncle Bob coined “ticket-punching”.
Here’s the definition:
Ticket-punching: v. an over-focus on schedules made, boxes checked and tasks accomplished, whereby the autistic adult is perceived as “missing the moment” and “more interested in lists than experiences”
This ticket-punching behavior, so I’m told, is especially prevalent during traveling. Some adults on the spectrum may be great travel coordinators – almost too good at arranging tours, meals, destinations and activities. His partner benefits greatly from this talent, of course: who wouldn’t love to have all these arrangements made competently, efficiently, and even cheaply?
But there does seem to be one problem. The non-Aspie partner may complain of feeling alone on the trip, like the only one actually experiencing all these wonderfully scheduled happenings. Out touring, she may look to her partner to share a smile of enjoyment, and find he’s busy consulting a map or phone, planning for the next event. During dinner, she may move to share a taste of her dessert, only to find him more preoccupied with calculating the gratuity, the offered bite left untaken. At the end of the evening, she may find that they’re “sharing” a sunset – but instead of feeling companionship, she can sense he’s a million miles away. It’s not a content quietness they’re enjoying, but a strained silence she’s enduring.
I often hear these clients ask Why? Why go to all the trouble and expense, the time and the effort, only to stay so emotionally disconnected? She may find trips less and less enjoyable because of the loneliness, or she may find the change of scenery a necessary distraction to home life. Whatever the case, she’s often dissatisfied with the vacation, and the harder he works to make it a success, the less of a success it tends to be.
But here’s what I suspect. I suspect he has difficulty enjoying the trip, (unless he’s actively engaged in learning). I suspect that opportunities to sit and enjoy the scenery are either solitary activities for him, or if engaged in together, leave him baffled as to what to say or do. I think ticket-punching gives him a role to fill that allows him to watch his partner have fun and enjoy herself – and this is often the closest he feels he can come to having fun himself. He’s much more comfortable with setting the stage for his loved ones to enjoy themselves than he is with joining them emotionally. If he cannot join, he logics, he will make himself useful. And he often does.
From his perspective, really enjoying himself, getting lost in the moment, means he is likely to do something “wrong”. Fun may mean embarrassment over that goofy laugh, or laughing too loud or too hard or too long or at the wrong time. Being unselfconscious could mean losing pace with the tour group because he is caught up in marveling at the stars, or ordering dinner before the server has taken his drink request, or starting to talk excitedly before his friend is finished with his story or missing the cue he was supposed to pick up that now is the time for silence. Letting go and participating could mean possibly ruining the trip, alienating fellow travelers, making a fool of himself. The risk-benefit analysis points to sticking to what he’s good at: setting the stage for others, who don’t make such errors.
And here’s another benefit: adults on the spectrum can often enjoy the memory of happenings much more easily than they can enjoy those happenings in the moment. Visiting a happening via memory is risk-free – it’s safer to have fun once you cannot fail. It’s not that adults on the spectrum don’t feel – very deeply, in fact. It’s that feeling, and expressing that feeling, has become associated with things like embarrassment and failure. Those of us who can enjoy a trip without obsessing on expectations and possible points of social failure are so lucky.
So you may try starting small. If you and your partner want to try to experience the moment, why not take it slow. Expect that a vacation to the Galapagos Islands will bring with it an immense amount of anxiety; a short drive to the park or dinner. He may try talking before thinking too much about it, and you may try accepting social errors as part of the desensitization process. If you both try to be present emotionally, perhaps you’ll find that silence can be more comfortable than you thought.