The point
of gratitude
lies in first
feeling gratitude
that one owes
gratitude.
When I fight the demands of my fixations, and when my urge to do what my fixation dictates and my determination to ignore it smash into each other, I can erupt into anger. When I erupt into anger, I start hitting my head. I want to take control of the situation, but my brain won’t let me. Neurotypical people never experience this, I guess. My rage is directed at my brain, so without thinking anything through, I set about punching my own head. Once I’ve mastered a fixation, I’m able to set its demands aside, ignore what my brain is saying and act according to my own wishes and feelings. If people try to tell me off while I’m hitting myself, or to forcibly stop me doing it, or yell, “What are you doing?” at me, I become utterly dejected. The more frantic and desperate I become, the more I punch myself: by now, it’s no longer about punishing my brain, it’s about punishing myself for having lost the plot so woefully. If, however, people don’t flip out at the sight of me and understand that I’m not fully in control at such times, their forbearance gives me the headspace to think that one way or another I have to stop myself. So the next time you see someone like me in mid-meltdown, I’d ask you to conduct yourself with this knowledge.
There are other times when I succumb to bitter emotions or when things overwhelm me, when quick as a flash I sink my teeth into the sleeve of whatever I’m wearing; and as I bite I emit these feral noises that have no meaning like “Wooooooh” or a high-pitched “E-heeeeee.” They calm me down. Often, when I’m pent up or wound up, I simply can’t defuse the situation and I get more and more agitated until I’m like a perilously overinflated balloon and even the tiniest thing will make me explode. By biting my sleeve with all the strength I can muster, it’s like the air is slowly let out of the balloon and gradually I return to my usual calm self. Biting my own clothes really isn’t cool, I know, but as things currently stand this is what I need to do to stay on top of my challenging behavior. My goal for the future is to control my meltdowns without resort to this somewhat drastic tactic.
Some people have rather fixed ideas about how those of us with autism ought to be supported. If they were all as correct in their views as they believe, however, autism wouldn’t still be causing all the challenges and difficulties it does. You meet people who tell us, “Nope, you’re doing it all wrong”; and, “Every single person who attends this institute makes amazing progress”—but if the latter was really true, word would spread like wildfire and everyone everywhere with autism would have adopted the miracle method ages ago. Any given therapy method might well work to some degree for some people with autism, but no approach will work across the board for every person with the condition. By the same token, I don’t claim for a second that everything I’ve written in my books applies to each and every neuro-atypical person.
When “help for special needs” is considered, everyday assistance or ideal environments are often raised. These matter, for sure, but in my opinion the vital aim is to nurture motivation. Not stamina for its own sake, nor patience for its own sake, nor programs offering instant results, but hope for the future, positivity about learning and practical skills. What matters to people with disabilities is how they can lead rewarding lives twenty or thirty years from now. Who knows? Trying new approaches might reveal new and better paths. I would like for the chance to acquire new experiences to be thought of not as a favor but as a right.
Special needs teachers and helpers who can evaluate the effects of the help they offer are truly awesome. In contrast, those who think of themselves as infallible never stop to consider that they themselves could be connected with a child’s unwelcome behavior. Please reflect, often, upon what’s going on. We are people, like you, and our moods swing along with circumstances, like yours. You’ll see how and why if you stop and think. Help isn’t just a matter of getting us through our daily routines without a meltdown. Help varies from person to person. The help we really need might not be the help that others are bent on giving us. Events do not follow a script. This is being human.
When I’ve fallen into a bad mental place and I’m furious at myself for having fallen there, here’s how I’d like you to handle me. If I’m all agitated and grouchy, please let me work through it. If I’m kind of at war with myself over control of my emotions, nothing you say is going to get through to me. Please be calm and even-tempered when I’m mid-meltdown, and don’t try to talk me out of it. Reprimanding me while I’m struggling to master emotions carries this real risk: the words you use can all too easily get tangled up with my anger and complaints, which in turn can create a new verbal fixation. Your words will then stir me up even more, and I’ll be reacting to and provoked by them in spite of my best efforts. If I’m only battling my emotions, then the more often I experience them, the sooner I’ll be able to exercise control. But if a new fixation or verbal obsession gets added, I’ll be compelled to follow its script every time; and I’ll be angrier, for longer. Finally, once I’ve come back to myself again, please just treat me as you normally do. Reproaching or punishing someone with autism for having a meltdown makes us miserable. Rather than working out what to tell us at times like these, we’d prefer it if you just maintained the same calm attitude.
When boundaries of behavior are set, it’s crucial to respect those boundaries, but it’s doubly crucial that the boundaries are appropriate and realistic for the person and context in the first place. Unwarranted praise for sticking to rules doesn’t make us—as adults—pleased. Similarly, being told, “Ah, sure, we’ll make an exception to the rules just this once, just for you” is confusing, if not dismaying. From time to time situations will come up where, for whatever reason, stress levels mount and rules get bent and you might need to look the other way for strategic reasons.
When we’ve broken a rule, it’s not because we believed ourselves to be an exception to it. Usually, we had no choice in the matter. On these occasions, please omit the telling-off and say to us instead, “Let’s try and do a little better next time, shall we? And remember, I’m on your side.” If possible, please keep your attitude and your demeanor the same as it always is. We already feel bad about having messed up, and guilty about the nuisance we’ve caused for our family and the people around us. Believe me.
The times when a person with autism is conscious of his or her autism varies from person to person, I think. When I’m at home I often almost forget the fact of my autism, but to step outside our house is to encounter a host of situations in which the differences between myself and others soon become impossible to ignore. Some people might point to this as further proof of the world’s harshness, but that’s not actually how I see it. For me, it’s a matter of pace. When I’m at home I can go about my daily routines at my own speed and this is why I’m able to forget about my autism. Perhaps doing things “at my own speed” could be construed as selfishness or dawdling or loafing about, but my interpretation, as applied to people with autism, relates to feeling comfortable and secure. Because I can seem ill-mannered or be noisy, people might not think I care one way or the other about matters of comfort, but in fact I’m hypersensitive to these things. Whenever I get trapped in a loop of asking the same pointless question over and over, or whenever I laugh out loud at darkly inappropriate moments, I get exasperated with myself and think I’m just incurably useless, and I sink right down.
I encroach upon other people’s comfort zones yet I remain acutely sensitive about my own, maybe because I can do nothing to modify my circumstances. Even if I’m having a really bad time of it and someone urges me to go off somewhere to cool down on my own, doing so isn’t at all straightforward. These “bad times” can blow up out of nowhere and any safe place or chill-out room offered to me appears to my eyes as infinitely distant, even if it’s right there in front of me. I know I can visit safe rooms when I’m on a break or just when I feel like it, but if I was able
to go there by myself midway through a meltdown, I’d also be able to indicate that I need help. Unfortunately I can do neither.
I hope that, one day, caregivers and professionals will be able to help people whose autism prevents them from showing they need help before it’s too late. That would be something.
When a person goes off the rails mentally they cease to be their usual selves, it seems; yet even the person concerned has an inkling something really isn’t right. This self-awareness strikes me as odd. If they know they’re behaving strangely, they ought to be able to fix it, you’d think; and yet they can’t. They suffer for this, surely. I wonder if they perceive what people with full-on autism like mine also perceive: that while mind and body appear to be interconnected, they are actually not, not as we experience them. I don’t believe that people with special needs have wholly unique existences. People sometimes say that there is a lot to learn from those of us with special needs, but I don’t think the positives should be the sole focus. There are kindhearted people in the world, and not so kindhearted ones, irrespective of whether special needs enter the equation. To bring about equality for the neuro-atypical minority, we first need to dispel the illusions about us. We aren’t angels, nor are we devils; we are just ordinary people.
Some people with autism object strongly to the use of the word gai, meaning “harm,” in shō-gai, the Japanese word for disability, where shō means “obstacle.” I understand where they’re coming from, but I think that trying to impose their views on everyone else, whether they disagree or are just indifferent, is going too far. Such an unquestioning belief in their own correctness risks doing more harm than good.
Bringing up a child who has special needs really isn’t an easy matter, and when the parents of these children find themselves unable to love their kid, I can’t think of them as bad parents; rather, I blame the situation and its hardships. I also think it’s only natural for them to wonder how things would be if their children didn’t have any disabilities. There are times when I, too, think this way, and I no longer feel guilty about doing so. It’s only a flight of fancy. The neurotypical Me in these daydreams always seems to be smiling, but I have no way of knowing if that Me is any happier than the Me I am in reality. Nobody in this world is free from worry.
There are some children with autism who just aren’t great at putting their things back in the correct place. Maybe they don’t understand why they’re the only ones being told off, even though they’re putting their items back in the same general area as the others—especially if it’s after the event.
To tackle this, I’d suggest helping the child put their things back in the correct spot—as often as is needed and prior to the child making the mistake. For example, a moment before the putting away begins, confirm that he or she knows exactly which name, symbol, label or sticker designates the right location for the object. Here’s why this matters so much: for children with autism, failure counts as a life experience, so repeated failure gets “grooved in.” Neurotypical children learn from their mistakes and failures, but some children—us—can only learn by repeating an action correctly, over and over. Further explanations with extra details won’t help, I’m afraid. There are many ways to get something wrong, but usually there’s only one way to get it right, so to help the child to understand what that right way is, it’s by far best to teach and to show only the correct way. Adults with a teaching role seek to enable us, so we can do the things we can’t—yet being told off for failing at the same task every day is a deeply negative experience, and in front of our friends and classmates, it’s even worse. Remember, our feelings are as readily bruised as yours.
Bearing the above in mind, when I’ve done something wrong, I do want to know about it. Otherwise, people won’t recognize me as a valid person and, at best, they’ll just feel pity for me. For sure, there’ll be things I can’t do even after you’ve shown me where I’ve gone wrong again and again—but that doesn’t mean I won’t be able to manage them someday. When you encounter a child who reacts resentfully to guidance, I’d guess they’ve been disciplined in the past in ways that taught them they were a waste of space, or plain bad. Even young children understand when they’re being scolded for a genuine wrong, I think. Some of them will be feeling terrible because they know they’re in the wrong but can’t see a way to remedy it. I believe that all children wish to grow and embrace their futures. Please nurture this wish.
I must admit, a part of me shrivels up inside whenever I hear the stock phrase, “Everybody’s doing their best!” Why? First off, “Everybody’s doing their best” is rarely a statement of fact. Usually it’s truer to say, “Everybody looks like they’re doing their best.” Looking like you’re doing your best is all well and good, but let’s not simply assume that it’s the reality. Next, I have a problem with the idea that just because everyone else is doing their best, I have to do so as well—that strikes me as artificial. Of course, there’s nothing wrong with doing something as best you can, and I’m not wallowing in self-pity, because often even my autistic best is beyond my capabilities on the day. The point is that to declare “Everybody’s doing their best!” ends up forcing comparisons of “bests,” which in turn feels unfair and pointless.
When someone tells me, “Keep up the good work,” I’m duly grateful, and if they tell me, “Stick at it!” I know they’re showing me that they’re on my side. Having your strenuous efforts acknowledged can fortify you and spur you on. However, we are all only human, and there are going to be times when “doing our best” simply isn’t an option. This needs to be allowed for, too. The degree of effort we put into a task should be determined by us.
Compassionate people understand that being told to “Do your best!” can feel like an extra burden, or come across as an exhortation to up one’s game. “Do your best” isn’t a harmful phrase in and of itself, but it’s wise to remember that there are some words and phrases which some people, quite legitimately, are happiest not using or hearing.
When I’m practicing something every day but I’m still getting nowhere, I feel like I’m plodding along, tortoise-like. Absolutely anyone can do this, so why can’t I? My ongoing failure weighs heavily. It’s taken for granted that in order to acquire the skills we don’t have, we need to practice every day—this is why the people who work with us pay such close attention to the results of our practice. But for those of us actually doing the practicing, often the process doesn’t feel like the natural, obvious way of doing things at all. We’re always being told, “It’s fine to progress toward your goals a tiny bit at a time”—but this is our therapists and helpers talking, not us. We, who are putting the practice in, want to master whatever we’re doing as soon as possible. Having us take these incremental steps might feel right and look correct for the neurotypical people around us, but those of us who are being obliged to work at a snail’s pace might be sighing inwardly at our slow progress toward new goals. Anyone—neurotypical or not—can tell whether they’re getting better at something. Or not. Surely?
My point: please don’t think that by not pushing someone toward a goal or by not stretching their abilities, you’re automatically making it easier for them to arrive. Life isn’t that great for turtles, and plodding along tortoise-like is no picnic either.
Somewhere, sometime, someone
is expecting us; so we suspect.
Here we stand at the heart
of the world; so we like to think.
Self-regarding animals, we human
beings; and curious. I suspect
however weak we are, however
grueling our lives, this is why
we carry on.
My fixations can hang around a long time before they disappear. However much effort I put into trying to free myself from these obsessive behaviors, they remain really stubborn. You—our minders, teachers, guardians—can act like nothing’s wrong, or you can threaten to punish us if we don’t stop or offer to reward us if we do, but the fact is that
some fixations are nearly impossible to get around. Maybe some people with autism derive comfort from them, but my guess is that most of us want them to stop, and suffer because we can’t make them go away. Speaking for myself, the only cure I know is for you to give us—and our fixations—time.
You can help by staying with us as we work through our fixations, by not reproaching us too much for exhibiting them and by maintaining an unswerving belief that one day we will be free of them. Because they don’t last forever. Even the most ingrained fixation can just up and vanish, as if some demonic curse has lifted itself. I can’t explain how or why they go when they go, but I know that once an obsessive fixation has departed, it leaves me in a state of perfect bliss.
Naturally, people in our lives point our obsessive behaviors out to us because they want us to stop doing them. But I would ask you not to reprimand us in ways that damage our dignity. Believe me: the biggest victim of a fixation is the person who suffers from it.
It’s vital, I believe, that those of us who live with autism are permitted to exercise choice independently. Even after I became able to choose items on my own, my mother would, without fail, check with me: “Look, there’s this one, this one and this one—which would you like?” She would ask me to point to the one I wanted and confirm my choice yet again by having me spell it out on her palm or my alphabet grid. Mom’s asking me to state my choice twice cost her extra effort, but for me it mattered very much. My outer expressions don’t always correspond to my inner intentions, so it was really important to practice expressing my wishes correctly. In fact, it was thanks to these opportunities my mother gave me to choose between objects that I recently worked out why I sometimes select an option at odds with the one I really intended to choose: it can be because an aspect of the object seizes my attention, or a leading phrase in the question is swaying my choice, or I’m being influenced by a question-and-answer pattern that is “pre-fixed” in my head.
Fall Down 7 Times Get Up 8: A Young Man's Voice From the Silence of Autism Page 9