Emotional Well-Being… for the AutismFamily!

This is an historical post from an earlier blog, Adopted Son of the Autism Family, which I had before this current blog. It is re-posted without modification (other than this introductory sentence).
This is a lecture I gave at our FamilyRounds educational program last week. The embedded video is the actual lecture, and an edited transcript follows below. Enjoy! And … if you’re a member of the AutismFamily, please pass this along and take a few moments to think about how you can commit yourself to being well, for your own sake, and for the sake of your family members.
My usual lectures involve a lot of details, a thorough review of the latest scientific literature, with examples from my clinic and both existing and possible future applications. I rely heavily on data, numbers, which makes sense if you understand my specialty. But when I started thinking about this topic of emotional wellbeing for the AutismFamily, however, I came to the realization that this is not a story that needs to be told with a lot of new data, or a synopsis of findings from the latest scientific literature. This is a different story, which begans with truths all of you – all of us – know, but struggle to employ in our daily lives.
I hope this post and lecture can be the beginning of an honest conversation about how we bring this concept to the AutismFamily and learn – together – how to be and stay truly well. If we do this right, wellbeing is both an aspirational goal (one we progress towards our entire lives, going ever farther) and a daily reality. But let me start with what wellbeing is, and why it matters. The World Health Organization defines health as “a state of complete physical, mental, and social wellbeing and not merely the absence of disease or infirmity.” That is, it is not our jobs to merely not be sick, but to thrive. It is not enough to merely not die, but we must also live. The WHO, which is mostly concerned with so-called “physical” diseases (acquired injuries, consequences of malnutrition, heart disease, and so on), astutely included not just “physical” wellbeing but also emotional wellbeing in their definition. The truth is that there really is no difference between the two. The brain and body are interconnected – that’s the whole point of having a brain. Research has shown that measurable “brain” factors like a disposition towards positivity can actually have effects on cancer outcomes that in some cases, may even be comparable in magnitude to choice of chemotherapy agent (here’s another example for cardiovascular disease). Studies have shown that depression is a much bigger risk factor for a heart attack than smoking (here’s another cardiovascular summary). And when people do suffer from both “physical” and “psychiatric” disease, the cumulative effects are frequently far harder for them to manage. Most of the disability associated with chronic medical illness is explained by whether or not the person is also depressed, not the severity of the illness. Across many illnesses, depressed people are three times less likely to be able to successfully remain adherent to their medications (my dissertation has an extensive review of this literature). Hopefully these statistics provide an introduction to why and how the way we feel emotionally is every bit as important as the way we feel physically, if not more so.
There’s one more reason that all of this is particularly important for the AutismFamily. As parents, you need to take care of yourselves, so that you can take care of your children. You’ve all heard this one, boarding a plane: “In case of a sudden loss of cabin pressure, inflatable air masks will drop …” They tell you, if you are traveling with a child, secure your own mask before you help your child get their mask on. It counters every impulse most parents have. Autism parents, especially, drive, fly, run, leap, fight for their children. Every day. How could you even think about taking care of yourself before your child? On the airplane, if you try to put your child’s mask on first, you may pass out in the process due to lack of breathable air. What good would you be, to your child, in an unstable plane at 30,000 feet, unconscious? Where are the places in your life where, if you do not take care of yourself, you cannot be the parent you must be? The moral of the story is that, even if you don’t believe maintaining your own strength is important for you, it’s important for your son. It’s important for your daughter. And with autism, as you all know, this is a cross-continental flight, not a puddle jump. We’re in it for the long haul.
So, taking care of ourselves is important. Again, though, you may know more of these details or less of them, but you know this. The problem is not conceptually or abstractly believing we must take care of ourselves. It is actually doing so. When I describe our intensive behavioral clinic, I talk about what our therapists do as easy to say and hard to do. Like being told that one loses weight by exercising more and eating less. Everyone knows that already. Just knowing that isn’t enough.
So, one of the struggles with where to go from here is the approach we take towards wellbeing, and making it actually work. I am a firm believer in tools like mindfulness and other formal tools that help us feel and be better. There is really solid evidence that mindfulness can assist with helping people recover from significant emotional disturbances, and it can also help them develop a stronger sense of emotional resilience – the ability to bounce back from challenges. The problem with these tools, often, is that they’re not taught in a way that is broadly applicable to our daily lives. If you’ve ever gone to a lecture about meditation or mindfulness, you’ve probably seen a picture a picture of some beautiful person in designer yoga clothes, serene, meditating or doing a yoga pose on the beach at sunset. I think there’s a problem with this mentality. The problem is that most of us do not struggle to feel mindful or spiritually awakened when we meditate on the beach at sunset. We don’t need that kind of help – I think you’d have to have pretty serious problems to be unable to meditate in this kind of situation, don’t you? If we build up emotional wellbeing practices that only work at the beach at sunset, that only work every few years when the family takes an expensive, major vacation, is that really enough? I think what we actually need is this: wellbeing practices that work in the chaos of everyday life, like those described in Jon Kabat-Zinn’s excellent Full Catastrophe Living
I’d like to spend a few minutes talking to you about mindfulness. The first thing I want to stress is that all of you have experienced mindfulness. People who exercise know it as the zone. Musicians know it as the groove. At some point, doing something (maybe it is yoga on the beach at sunset), you’ve been there. There have been terms throughout the ages to describe this concept – people called it synchronicity or feeling God’s pleasure. What mindfulness is truly about is taking that sensation or state, and making it something you can experience anywhere, anytime, and purely because you want to and not because of the activity involved. So, mindfulness isn’t really an exercise anyone can teach you, but rather, the more exercises you learn that generate a mindful state, the more you know it when you feel it and you can learn your own ways of being mindful when you need to or want to.
One important concept that can be helpful for mindfulness is the “observing I.” There are many different “I”’s – for all of you in the room, you’re probably a husband or wife, a son or daughter, a father or mother, you have a profession, perhaps you have an ethnic identity, maybe you identify with the kind of music you like or clothes you wear. You fluidly access these different identities as they are relevant to the task at hand, so that, you may not approach work as a mother, and you approach your child differently than your parent. So, amongst all of these I’s, the observing I is a special I that emphasizes equipoise. Equipoise means a state of balance. Think about a big cat, like this one. If you’ve ever watched cats stalk their prey, perhaps on the nature channel, you might notice that, when they’re lurking in the grass, they pass through a moment where they are perfectly still. In that moment, they are dedicated to neither attacking nor walking away. When the moment passes, they frequently do either of these two things, but during the moment, they are neither active nor passive, neither engaged nor disengaged, neither approaching nor avoiding. This is the observing I, and it is paradoxically the lack of engagement or disengagement of this I that allows use of the observing I to make us more able to bravely and fully act on our decisions. To take a step back from our decisions (not to avoid acting, per se, but to be disinterested in whether we act or do not) allows us to be mindful in our decisions, and as we do that, we find that we make good decisions and we enjoy them. Once we have this feeling, we become more like this pond, in the middle of a forest, with a tree standing next to it. On a warm summer day, the pond’s surface is a still mirror, a beautiful reflection of nature’s glory. From time to time, a leaf falls from the tree, and when it does, in an instant, it shatters the pond’s beauty. But as the pond, we know that we have survived for ages and will survive for ages more. We know that leaves come and leaves go, and when the leave falls underneath the surface, we the pond will return to our mirrorlike serenity. In this way, mindfulness allows us to do the things that seem impossible. We cannot eliminate fear, but by embracing the presence of fear without engaging in it, we become transparent to fear, and it cannot control us. We cannot eliminate pain, but by embracing the presence of pain without engaging it, again, the pain passes through us, and we do not suffer.
One of the great powers of mindfulness is that, by engaging this observing I, we stop being the victims of our own thoughts. Stop and think about your thoughts. If we are honest with ourselves, our thoughts are not always our friends. Sometimes, when there is a challenge coming up, we “blow it off.” We assume we’re invincible and unstoppable and we don’t study for our exam or save money for when we have to file our taxes, even though we know we’ll “owe.” Too little stress or anxiety is bad, because when we don’t experience any stress, we don’t work hard and we don’t deliver to the level of our talents. But isn’t there such a thing as too much stress, also? For that same exam, we could spend all our time worrying about how hard it is going to be and how we’re never going to pass. So much time worrying that our worries become a self-fulfilling prophecy, when we don’t pass, because all we did was worry instead of studying. So too much stress is a problem, too. Psychology has a name for this concept, the Yerkes Dodson law. Of course, the problem with this information is that telling yourself not to be stressed is like trying to think about nothing. It tends to have the exact opposite of the intended effect.
Back to our thoughts. I said “victims.” Sometimes, I mean it. The same story about stress applies to our thoughts. You’ve heard people say that “good is the enemy of better.” Can’t you think of some examples of this, where you’ve lived with some problem or nag that you should’ve fixed years ago, but since you learned to get by, you just can’t seem to get up and do anything about it? We’ve all done that. We’re probably all doing that. Sometimes, “better is the enemy of good,” too, though. The name for that is perfectionism. I used to think that perfectionism was an asset, and perhaps some small amount of it is. However, perfectionism is probably a good thing far less often than we give it credit for. So we all have thoughts that make us feel bad about ourselves instead of doing good, and we have thoughts that make us feel good about ourselves, and they prevent us from doing even more good. The reality is that your thoughts are often frenemies  — they look like friends and, as soon as we drop our guard, wham, they end up doing us wrong. That’s how we become victims of our thoughts. Where mindfulness comes in is that we don’t try to stop having these thoughts (they’re pretty natural, it probably wouldn’t work), and instead we  allow them to come and go as they please, but they are always thoughts we have, and never thoughts that have us. We are observant of them but dispassionate towards them. That takes practice – we all think terrible things about ourselves, like, “I’m a failure and I’m always going to be a failure.” Most of the time, we can distract ourselves or knock ourselves on the side of the head, but when we’re feeling really down, it’s hard to be dispassionate towards a thought like that. But, practicing the observer I lets us get there. 
I teach mindfulness exercises (and there’s one in the video above), but mindfulness is not an exercise. It is that thing that one learns experientially from doing all these exercises, and the intent is not so much to change you into something that you are not but to remember who you already were – what you felt like when you were in the zone, the groove, you had the flow or the beat or you saw the vivid colors or ran like the wind. In this way, I think mindfulness is a perfect fit to the topic of developing and maintaining emotional wellbeing for the AutismFamily, because the truth is that I don’t want to change you – my service is merely to help you be the best you.  Mindfulness then is a tool to embrace all the reasons you cannot care for yourself, and all the thoughts telling you you’d be selfish to care for yourself, rob them of their power, and allow you to do what you must in caring for yourself.
Another exercise that may be helpful is to take a sheet of paper and brainstorm on the things that are the zone, the groove, the mindful times for you. Not the times when you had fun, necessarily, but the times when you felt that, right where you were, when you were, you were doing what you ought to be. Those times when the world felt right. Then next to them, write down when the last time you did those things was. Was it very recently? Was it a year ago? Two? Not since 1976? If you are doing these things that make you feel the zone routinely, that’s a good start. Next, ask yourself how you can be mindful even more often. If you are doing them rarely, you may need to spend some time just having experiences, getting back into touch with what might be the groove for you. Mindfulness practices can help with this, because as you experiment with different activities, they will help you know when you are where you should be.
Yet another, different way to approach this is to suppose someone were giving a speech celebrating your life, looking back from the future, or making a movie about you. How would you want to be remembered? Would you be able to pick 5-10 adjectives that describe who you’d want to be remembered as? You probably have a lot of future ahead of you, but then, if you go back, can you think of times that could be scenes in your movie or the speech, that would tell the story of why those adjectives fit you? These adjectives are your values, and these scenes are times when you were living your values. If you think back on them, you’ll probably be surprised to note that you did not pick all positive or happy scenes, and in fact, many of your values were most lived out in some of your darkest times. That living by your values, doing what must be done, in the midst of the storm, is again what it means to be mindful. It’s what one means when one says that the human spirit triumphs in adversity. 
What all this has to do with emotional wellbeing is that one of the most central ways to build and keep emotional wellbeing is to try and live your life in such a way that you are cultivating experiences where you are mindful, not merely experiences that you think will make you happy. This is when you are in the zone, in the groove, when you feel the cat’s sense of equipoise. If you aren’t regularly doing those things that remind you of who you are and who you want to be, the doctor’s orders are that you need this, surely as you need oxygen or food or water. If you are doing these things, but they are rare or special (like when you went hang-gliding or toured the Great Wall of China), then you must think about what you can do on a daily basis that captures this same feeling. If you are doing small things daily, the thing to do is to ask how you can feel this way not just as part of an activity (whether a coffee break or yoga) but how you can bring this way of being into your daily life.
Lastly, as part of this, I want to make a call for togetherness in the AutismFamily. We come from different experiences, different places, and different needs. We bring different strengths and talents. But as a Family, public accountability makes a big difference. As a leader, I must be careful to care for myself, not just because I have to be there for my team, but because I am a model to them. The same is true for you in leading your families. People — my staff, your children — are watching you. So, my parting thought is that, as an AutismFamily, we need to hold each other up. To celebrate each other, but also hold each other accountable and make sure that each of us learns to take care of ourselves, so we can be there for our families, and for each other. Only then will we maintain the strength and energy to build the world we know we must build.
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