Winston Churchill once described his depression as a big black dog that was his lifelong companion. Our poor kids also commonly suffer from any of a number of lifelong “companions,” one big one being obsessive compulsive disorder (OCD). Bigger than his big sensorimotor issues, speech dyspraxia, or medical issues, OCD is the number one challenge in Peter’s life. He describes it as “the terrorist,” the monster that “assails” his mind and behavior, that “vaccuums” his better thoughts and self. It is his “rate limiting step,” and has the greatest potential to limit his potential.
We have spent an enormous amount of energy working with Peter to help support him to get a leash on this problem. The results so far? See for yourself, and take a look at Peter’s essay below, in which he shares an inside look at how to battle the OCD monster. Though the battle is definitely a work in progress, it is his hope that in sharing his experience, he can share some practical and effective wisdom from his extraordinary team of consultants that will help other families in the same boat.
BATTLING THE OCD MONSTER
by Peter Tran
I was sitting in the car, grinning ear to ear after tons of work earning points by doing homework, exercising, and inhibiting my OCD. I finally earned the 50 points to go to Target!
I absentmindedly started chewing on my pink goggles tapping toy strap. I guess it was a habit. You don’t think about what you are doing. The strap suddenly broke. I had chewed it clean through!
By then we had arrived at Target. I felt overjoyed that we made it at last. I headed off to the stationery section for markers. The markers became excellent in my eyes because they were like a rainbow- red, orange, yellow, blue, purple, and green, long, good, smooth shapes, all neatly lined up in the box, full of possibilities. I could draw with them- imagine drawing Peter, good and successful. I could draw my favorite foods like meat, doughnuts, seaweed, and hotdogs, which make me happy. Mom doesn’t let me eat those often, so drawing them would be another way to enjoy them. I just drew myself eating a donut with rainbow sprinkles and a hotdog. I imagined it would taste heavenly, the hotdog hot and salty, and the donut soft and sweet. Drawing and imagining are great ways to enjoy something without doing it. Maybe I can do this with my compulsions.
Anyway, I did get my box of markers. As I picked it off the shelf and held it in my hand, I felt very satisfied. Ahh! Just like scratching an itchy part. Unfortunately, my peaceful content did not last. I suddenly remembered I had ruined my pink goggles in the car. That made me feel like sharp, jagged red and orange lines!
I pulled Mom up to the second floor. I knew just where the goggles were. I got a pink pair off the rack. I felt joyful that I could replace my treasure.
But a nagging feeling lurked. Which prize would I buy? Fast disappearing was my victory. Instead I had a dilemma. What would I do? I wished I had not destroyed my goggles.
At the check-out, I first put the goggles in the discard cart. The clerk checked me out. Unfortunately, I couldn’t move. How could I leave without the goggles? I needed those. I grabbed them back. The girl rang up a refund for the markers, and handed Mom the change. But then I couldn’t leave without the markers! Mom finally decided to buy both, and let me have one now, and earn the other. So she asked, “Which one do you want now, Peter?” I couldn’t decide. I grabbed the markers because they were my first love, and Mom whisked away the goggles in her purse.
Unfortunately, all was not well. The markers didn’t fill my heart. I put some in my metal box where I keep my treasures and others in a plastic bag, but nothing felt right. Mom told me you cannot be satisfied with what can never satisfy. Truly, OCD can never be satisfied. It’s like a bottomless pit. Great was my disappointment. Instead of learning my lesson, my OCD found a new object. I ran around the house looking for the pink goggles. But Mom had hidden them well. They were not in her purse. I carried on for hours, insisting on going back to Target for another pair. But Mom said, “No, you must earn another 50 points.” I hounded her, but she held firm. Dad told her to take a break from me, so I lost her for the night, and with her, my best friend.
I fussed all night, and continued badgering everyone the next day, but it didn’t help. What finally worked was writing this essay. I earned all my points, and got my pink goggles. Best of all, I got to be with Mom. And my OCD felt tamed. I didn’t feel as crazy.
Unfortunately, that was just one battle. The “Target OCD” kept rearing its ugly head. I kept destroying goggles in less and less time, earned points frantically to go to Target to replace them, and then would start over again. Going to Target and buying goggles was not as satisfying as I hoped, and the satisfaction lasted for a shorter and shorter periods of time. By the time I was back in the car returning home, I was already asking for Target again. A friend of mine named Rosemary wrote a song for me to sing to talk back to my OCD:
“You’re a big fat liar, sowing doubt.
It matters not to me how loud you shout.
With Jesus in my heart I will not pout,
But chew you up and spit you out.
All you deserve is pure disdain.
All your tricks and ploys are plain.
God is my shepherd, He will reign,
His gifts to me won’t be in vain.”
I realized from my own hard experience that Rosemary’s song was true. OCD is a liar. The brain thinks it can feel good if you perform the compulsion like buying things at Target, but it doesn’t work.
The sad thing is that reason is not enough to dispel OCD. I am still hounding my poor mother to go to Target. Despite knowing how meaningless it is to go to Target, despite loving my mother and knowing she is right, despite all the suffering OCD causes me and my family, I still am its captive.
I’m in chains, in mental agony.
Going round and round a merry-go-round
That revolves faster and faster.
I desperately want to get off.
My mind revolts against itself.
But all is a frantic gallop
I can only pray for Jesus to cast out this demon.
I’m Not the Only One
Tito Mukhopadhyay is another young man with autism and severe OCD. In the following passage (2008, pp. 186-7), Tito describes his experience of an obsession.
”When I came to Hollywood, I got some new obsessions. One was riding a metro bus to a certain destination, and then returning by the metro underground train to the Hollywood Highland station From there, I would walk back home. It became my daily ritual.
How strong was this obsession? I felt like I was inside a plastic box, suffocated all day long, until I could take those metro bus rides. I could not imagine myself not riding the metro bus and train, even for a day… What if (I) did not? I am sorry to say, that I would have a temper tantrum, which was beyond my control…
My extreme obsession with train rides was beyond my reason and control, although I understood that I was being irrational about it. It is the same process that goes on in the mind of perhaps a chain-smoker, who, although he knows and understands completely well that he is not supposed to smoke, is still compelled to.”
I like Tito’s analogies about his experience of OCD (pp.48-49):
“Those extreme obsessions happened like a sudden summer storm, with its rushing energy flowing within my body and mind. They happened with no definite direction and with a high and powerful intensity, ready to take control of my reason and behavior.
They paralyzed all my
So definite were they.
They had them absorbed.
They left havoc
Along their way,
They engulfed the nights,
And the stretch of days.
I heard banging of doors
From my own twisted hands,
Shadows screaming with worry,
Fear or confused triumph,
They powered me up
With a prolonged pain,
With no eyes to see,
No ears to listen.
They left me no mind
To think or realize,
They did their dance
Of some dreamless delight.”
I think our experiences are very similar. I agree with his feeling that OCD vacuums the mind of reason and other thoughts. OCD often begins suddenly like a torrential rain, carrying the self away like a flood. It makes me feel affirmed to read about someone else experiencing the same terrorist assault. I am not lacking in character or effort. Severe OCD is a powerful enemy.
The Biologic Basis of OCD
So what does research tell us about the physiological cause of OCD? OCD is caused by a brain glitch. The orbital frontal cortex senses danger, like an overwhelming need to dump a glass of water because otherwise it could spill. The signal goes to the anterior cingulate gyrus which connects to the limbic system, including the amygdala, which generates a huge sense of anxiety unless I dump the glass. Then the signal goes to the striatum, which is the place intention gets funneled into action pathways. The caudate nucleus is overactive in OCD and overwhelms the globus pallidus, which inhibits signals. The uninhibited signal travels on to the thalamus which is the relay center of the brain, and connects to the brain stem and spinal cord.
Normally, the striatum ends the signal once the person realizes the glass is in a stable position (or the person realizes he already checked the door or turned off the stove). However, for a person with OCD, the striatum fails to inhibit the signal, and the thalamus restimulates the orbitofrontal cortex, and the circuit continues.
Neurons that fire together, wire together. So the more a person practices completing an OCD, the stronger the circuit gets, and the more he feels compelled to dump water, check the door, or perform whatever other compulsion the faulty circuit drives him to do.
Therefore, the best nonpharmacologic treatment for OCD is to stop doing the compulsion. It is incredibly hard to do, but like everything the more the person practices, the easier it gets. So how does one practice disassociating the trigger from the compulsion?
Let’s start with an illustration. Right now all I want to obsess over is going to Target. I want to replace my goggle strap. If you gave me a strap, I should be relieved, but I have a feeling that I would not be relieved. Therefore I believe I’m dealing with an OCD. So I’ll try to delay going to Target by writing this essay. The more I redirect my attention and energy into something productive, the better off I’ll be. I am building more mental control as I hope the intensity of the OCD subsides with each sentence.
Right now, I’m starting to repeat “Target, Target.” Instead if I say “points,” I can shift my attention subtly from the obsession to doing something more productive, to earning points toward going to Target.
This feels really hard. Every lower brain instinct is screaming to tell me I have to go to Target. The orbital frontal lobe sees no goggles or not the right goggles. The false thought is that getting the exactly perfect set of new goggles will quench a deep itch in my brain. My amygdala is firing fear and danger like mad. I must go to Target or be tormented with this feeling of craving or thirst or itch. On a scale of psychological stress between 1 and 5, 1 being calm ad neutral (no unsatisfied desire) and 5 being a frenzy to have the desired object of the OCD, I’m at a 4. (If I were at a 5, I would be hitting or scratching to get my way). So what do I do?
THE USUAL TREATMENT
What is the standard treatment for OCD? In otherwise neurotypical people, the treatment is fairly orderly. Taking a bottom up point of view, the patient needs to sleep enough so he has enough energy to fight OCD. He needs to exercise enough to work out unproductive energy. The fundamentals must be dealt with or no success is sustainable. I find vigorous exercise like biking helps decrease my OCD the most. Keeping busy helps a lot too. OCD moves in unless something else occupies the mind. It might move in anyway but a blank mind is an invitation.
Cognitive Behavioral Therapy (CBT)
The first step identifying the problem. Some people can recognize they are getting upset when their hearts beat fast, they are breathing faster, or if they get getting clammy hands. I’ve never had much body awareness. I rely on my mom or aide to remind me of when I look upset. Then I try to see the reason. For example, yesterday, I frantically wanted to cut a rectangular piece out of my brother’s box of asthma medicines. It had a bright green stripe on it that I had to get a piece of. My mom stopped me, and asked, “Peter, is this a legitimate desire? Does it make any sense?” Only then did I realize I was facing an OCD.
Then the patient learns coping skills to deal with the anxiety accompanying the obsession. Deep breathing, progressive muscle relaxation, and meditation often reduce anxiety. Once my OCD was really intense because we had just moved into a new house (stress may worsen OCD). Mom turned on my favorite rumba song. As we danced the rumba, my OCD anxiety melted considerably.
Next the patient learns self-CBT, cognitive behavioral therapy. He learns to identify the false thought, and replaces it with a memory of real experience or truth. Then he thinks of alternative behaviors besides doing the obsession, maps out. The probable consequences, and chooses the best distraction. Over time the obsessive impulses diminish. Once I had an OCD about buying orange gift cards and cutting them up. I thought I had to do it or die. I realized the truth was that I was not in any real danger, and cutting up the gift card was wasteful, like cutting up money, so I changed my compulsion. Instead of cutting up the money part, I just cut up the tag. That took the fun out of it. Soon it stopped. That OCD went away.
Exposure Response Prevention
The best way to get rid of a more stubborn OCD is to take the offensive and do ERP, exposure response prevention. That is when you purposefully expose yourself to an OCD trigger, but don’t do the compulsion. Repeatedly do this with stronger and stronger exposures till you lose the desire to do the compulsion. Once I used this method on a compulsion to dump glasses of water. I sat in front of a glass of water for longer and longer periods of time inhibiting the desire to dump the water till I no longer had the habit. Repeated practice disassociating the trigger of the glass of water from the ritual of dumping it made that OCD so weak that I extinguished it.
I used to clean off my utensil and plate between servings, although I knew I would eat more. I felt I had to do so because my food would look and taste better in a clean dish. Putting a new serving of food in a used dish would make the new food accidentally dirty, but I realize that the new food doesn’t get harmed. Also cleaning off my dish and utensils between servings had a downside. My napkin got soiled. So I made myself eat a new serving off of my old dishes over several meals. It took effort at first not to wipe my plate and utensils constantly, but got easier pretty fast. It only took me a few days to conquer that one.
Neurotypical people use this ERP method systematically. They make a list of OCDs from easiest to hardest to resist. They do ERP for the weaker OCDs and work their way up the list, celebrating each victory as their inhibition grows stronger and the OCD grip on their life grows weaker. Once they are done with the list, they remain vigilant for new OCDs, squashing them as soon as they pop up while they are still weak.
STEPPED UP TECHNIQUES FOR HARDER CASES
In people with autism you might not be able to extinguish OCD. For me, OCD feels like a direction my brain falls into naturally. So if I extinguish one OCD, another rises to take its place. If I tried to extinguish every compulsion I think my brain would keep looking for something to obsess about. So I divide my obsessions into “good” ones and “bad” ones. “Good” obsessions are ones I can use as “sled dogs,” meaning still live productively with. I explain more about that later. “Bad” obsessions are destructive and harmful. I live with my “good” OCDs and work on eliminating or at least decreasing the “bad” ones. The situation is like the good and bad bacteria in the gut. Good bacteria crowd out the bad. But it’s an uneasy truce. The “good” obsessions can transform into “bad” obsessions, like my increasing need to go to Target to replace goggles I would chew up. So I have to be vigilant. If an obsession turns “bad” or out of control, I can’t use it anymore to keep my brain from engaging in a worse one.
Taming the Tiger
If an obsession gets more intrusive, I need to fight it harder. Once I was sitting in speech therapy, when suddenly I had a sudden compulsion to grab a green pen I saw in Miss Shohig’s pen can. There was no reason or thought behind it. I just felt I had to have that pen. I imagined taking the pen apart. I had been into disassembling pens lately. Mom wouldn’t let me have the pen, and Miss Shohig put the whole can in another classroom. I tried to resist the compulsion and turned my attention to answering her speech questions. While my upper brain answered questions, my lower brain tormented me by insisting I get a green pen. Finally, I stood up abruptly and made a run for it. My mom ran after me. I saw a row of closed doors. Which one had she hidden the pens behind? I flung open a door and peered inside. The teacher looked up, startled. Mom closed the door and held me tight. She got me to the car. Miss. Shohig hid the can of pens for a number of sessions. My mom’s and Miss Shohig’s determination did extinguish that OCD. Now i can go to speech without craving a pen. The lower brain can be taught, but it may require force, liked Mom physically preventing me from my seeking the pens.
Sometimes you can try to get ahead of a runaway OCD. One day, Mom and I were sitting at the cafe at the exit of the Huntington Library. I earnestly wanted to work on my obsessive goggle tapping. It was keeping me from sleeping. So we tried some ERP. Mom put my goggles on the table. I set the timer for 5 minutes. The goal was to see if I could not tap for 5 minutes. To handle the anxiety, I turned to writing poetry.
“Closing Time at the Huntington Library”
I hear the soft splash of a fountain.
I hear the quiet murmur of voices,
broken by a harmonious chorus of “oh’s!”
as the baby next table over
had a mishap.
North I see the soft warm lights of the gift shop
shining through the glass walls.
They feel welcoming and comforting.
To the South I see a fountain,
like a big bowl with water flowing over its lip.
I see a soft golden haze behind hoary green gray desert leaves,
fading in a line to the horizon.
To the West is a brilliant blaze of setting sun.
I turn my face toward the East
and head home.
I felt much better. I realized I could survive without tapping incessantly. I was able to sleep better and kept my goggles out of sight in a drawer. I hear ERP usually doesn’t work that fast. It usually takes many sessions of exposure without getting to do the compulsion.
Instead of extinction of all OCD’s, instead of a cure, my goal is to develop more self control, meaning inhibition and attention-shifting. So short of extinguishing OCD’s, one can shorten the duration of engaging in the rituals. Delay doing the ritual. Engage the upper brain to creatively change up the ritual. At times I’ve used my creativity to avoid bad behavior that an OCD was making me do.
One time I had a crazy compulsion to cut up bright colored paperback book covers. That included an orange music book of Raffi songs and my mother’s medical review books, each of which had a bright red stripe.
I want you, orange book,
of the bright, glossy, orange look.
The smiling man, Raffi’s the name,
music man, of children’s fame.
Oh orange book
of the glossy look,
how I long to cut up your pages
Snip, snip, rip your cover fair,
more fun to cut than juicy hair.
If I could put my hands on thee,
my compulsion would so satisfied be.
Oh orange book,
Oh orange book,
How I long to cut up your pages.
A juicy slice my fingers feel,
curling strips like an orange peel.
A crisp sound cuts nicely through the air,
as my scissors make a sharp, straight tear.
Oh orange book
of the glossy look
how I long to cut through your pages.
But at the end of my rampage,
Alas! delight is just a phase.
A ruined book, disfigured and sad
reveals the mind gone partly mad.
And so poor book, rather than such a story,
I’ll leave you to your pristine glory.
I’ll turn my mind to poetry and math,
eat my dinner, and take a bath.
Putting Away Visual Triggers and Compartmentalization
The poem shifted my attention for one night, but alas! my OCDs do not fade readily. I kept going after the books. Mom hid those books away, but I found others. The obsession came to a head right before Christmas. Mom and my brothers finally had to pack up all the books on Christmas Eve when I was asleep. Mom left one shelf of books she was going to throw away anyway, and told me to just cut up those books. That compartmentalization really helped me. I see good books she neglected to pack away sometimes, but I go for the ones in the discard shelf instead. Takes some effort to walk away from the good books, but it’s manageable.
Sled Dog Instead of Wild Dog
The strategy I use the most is delay. When my OCD acts like a wild dog and makes me talk about going to Target again, I figure that at least I can use its crazy motivational power to get something productive done. So I turn the compulsion into a reward. Mom tells me I can go to Target if I earn points. I might earn a point for each lap I swim or sentence I write or edit. That way I not only leash but harness the energy of the OCD, turning the wild dog into a sled dog.
Right now I am writing to earn 150 points to buy a new set of goggles. I did a terrible thing. I love to tap on swim goggles. Swim goggles have just the right amount of bounce in them, and they don’t make too much noise. I had chewed through the strap of my own goggles. I remembered Mom had a pair in her swim bag, so I stole them. Poor Mom. She really missed those goggles, as she had taken good care of them for years. When I stole them, my OCD told me they would satisfy the craving in my mind for goggles. But instead, OCD made me chew up the straps (on my Mom’s) till they disintegrated in just two days. So now both Mom and I have nothing. My craving is as intense and painful as ever. I am in no better shape than I was two days ago. Actually, I’m in worse shape because I have lost Mom’s trust as I stole from her bag, and we are both goggle-less.
Yet though I know the OCD is a big, fat liar and causes suffering and destruction, I still feel compelled to go to Target and buy another pair of goggles. In other words, I feel compelled to repeat the same behavior. Buy goggles, destroy goggles. The only pleasure in the cycle is to bite into those straps. But do I even get pleasure out of that? Not really, I just feel driven. I’m not free to enjoy anything, just a miserable slave. I think I know exactly how a drug addict feels. He would lie, steal, and harm those he loves to do something that doesn’t even give much pleasure anymore, something he hates to do. OCD has no logic, reason, or mercy.
Once I replaced my Target obsession with a true thought like, “I don’t really need to go to Target. I lived happily for most of my life, going to Target only infrequently. Going to Target only makes me happy very briefly anyway.” Then I brainstormed alternative solutions and mapped the probable consequences. I could decide to get Mom to take me to Target. I might buy another pair of goggles. But then I would be feeding an ugly OCD that gives me no joy anyway. By experience I know this. Alternatively, I could go to Rite-Aide and buy markers. Purple, brown, orange, yellow, I could enjoy the colors. I could walk to Rite-Aide which would burn off some calories. doing something different would stretch my OCD and not reinforce my monstrous Target OCD. I chose the better solution that time. I chose to go to walk to Rite-Aide to buy markers.
I felt good about that decision. But what about this time? I really do need a pair of goggles to tap, and have lost my other pairs. I’m only a few points away from earning another trip to Target. Yet I know that going to Target completes a bad circuit and reinforces it. Maybe I can stretch myself, but not too much. Once I go to Target and buy the goggles, I will set myself a target date of making the goggles last at least two weeks before I let myself go to Target again.
I did actually make it for 10 days without destroying my goggle straps . That was a big improvement for me because at my peak of OCD intensity, I was destroying new straps before the day was done. I think the knowledge that I wasn’t going to Target for 14 days helped my lower brain to rein in. I had four more days to wait, but did survive.
Unfortunately, when I did make it to Target, I blew it. I bought a pair of goggles but destroyed them kind of immediately. I didn’t get much pleasure out of it either. At first I felt discouraged with my failure. Then I realized I can learn from my mistakes. I realized I need to set a firm limit on this Target OCD. I made it for ten days without destroying my goggles before. Next time I earn goggles, I will tell my lower brain that I can’t go to Target again for ten days at least.
Keys to Success
I realize OCD has a positive side. The Frostig Center published a study on kids with learning disabilities. The kids who grew up to be most successful had six characteristics. First, they had good self-awareness. In battling OCD, the first step is to realize you are having an OCD, and need to resist giving in. Second, successful kids knew how to set goals. You get lots of practice thinking up different things to do instead of the crazy compulsion. That’s setting a goal. Whenever I turn my “mad dog” OCD into a “sled dog” reward, I’m also setting a goal. Third, you have to be proactive and actually do what you planned to delay, change up, or not do a compulsion; proactivity is another characteristic.
Fourth, successful kids had good skills coping with emotions. When fighting OCD, you get plenty of practice with deep breathing and talking to yourself. Fifth, successful kids had perseverance. All those repetitive thoughts give lots of opportunity to become persevering fighting them. Finally successful kids were good at creating and using support networks. I could never survive OCD without teamwork. My mom and tutor, Belinda, help me all the time. It’s love that makes it possible to fight OCD. It’s hard enough to fight it with loving support; without it, the constant struggle would be impossible to keep up.
So despite the pain and suffering it causes, I guess OCD can actually be a training ground for success.
I thought you had no purpose,
I thought you were my bane,
But without you Target OCD,
What motivation would I rein?
Instead of being Wild Dog,
I made you, Sled Dog, run.
By earning points for sentences,
My essay now is done.
Mukhopadhyay, Tito. (2008) “How Can I Talk If my Lips Don’t Move?” New York: Arcade Pub.
Raskind, M.H., Goldberg, R.J., and Higgins, E.L. (November 2003) ‘Predictors of Successful Individuals with Learning Disabilities, A Qualitative Analysis of a Twenty Year 501
Longitudinal Study, ‘Learning Disabilities Research and Practice,’ Vol. 18, Issue 4, 11/03, pp. 222-236