Category Archives: obsessive compulsive

The Blurring of Diagnoses

There was a time in my life when I could not get through an entire day without throwing up.  I would get hungry, eat to the point of discomfort and vomit.  I went to therapists who tried to help me.  I tried various techniques, stalling methods, eliminating certain foods, but in the end nothing I did helped.  I couldn’t stop.  I remember sitting in my apartment, afraid to eat anything because to eat meant I would purge.  It was no longer a choice.  It was something I had to do.  All of this was complicated by body image issues, tremendous shame and the belief that who I was depended on how thin I was.  That I was dying inside seemed less important than how I looked.

“One major distinction between an addiction and a compulsion (as it is experienced in obsessive-compulsive disorder) is the experience of pleasure. While people who have addictions suffer all manner of discomforts, the desire to use the substance or engage in the behavior is based on the expectation that it will be pleasurable.

“In contrast, someone who experiences a compulsion as part of obsessive-compulsive disorder may not get any pleasure from the behavior he carries out. Often, it is a way of dealing with the obsessive part of the disorder, resulting in a feeling of relief.”  ~

When I read a description such as this one, I begin to question my eating disorder as addiction and wonder whether it was much closer to the definition for OCD  because though it all began with a desire to quell pain and seeking pleasure, by the time I found recovery, pleasure was illusive and no longer part of the equation.  “This can get a little confusing because there often comes a point for people with addictions where they don’t really enjoy the addictive behavior, and they are just seeking relief from the urge to use or engage in the behavior.

Although this can look like obsessive-compulsive behavior because the pleasure is gone, the original motivation to engage in the behavior was to feel good.”  ~   So we have come full circle and are back to addiction.

I bring all of this up because as with anything whether we are talking about addiction, OCD,  anxiety or any of the other numerous issues many people struggle with, the labels can overlap.  So I was an active addict and when I was active, my addictive behavior mimicked pretty classic OCD behavior.  There was a point when the idea of sitting with my feelings, sitting and not tamping them down with food was inconceivable to me.  I really believed I would die.  This statement describes OCD almost exactly.  “OCD… characterized by uncontrollable, unwanted thoughts and repetitive, ritualized behaviors you feel compelled to perform.” ~

And yet, even though OCD looks a lot like addiction, there are differences.  Differences that make helping someone with one or the other tricky, but understanding the differences is important.  For example the two most common forms of treatment for OCD is cognitive-behavioral therapy and medication, though neither have proven to be entirely successful and often it is said that OCD, like addiction is something one must learn to manage for the rest of ones life, these treatments flourish.  Treatment options for addiction have proven to be equally challenging.  Some people have found help in working a 12-step program, but others have not.

While the onset of obsessive-compulsive disorder usually occurs during adolescence or young adulthood, younger children sometimes have symptoms that look like OCD. However, the symptoms of other disorders, such as ADD, autism, and Tourette’s syndrome, can also look like obsessive-compulsive disorder, so a thorough medical and psychological exam is essential before any diagnosis is made.” ~

Someone whose neurology is autistic may have OCD AND a whole host of other things too, similar to the non autistic population.  Because there is so often an overlap, people mistakenly think that autism is the same as OCD or assume that ALL Autistic children and people have OCD.  The lines between the two become blurred and the distinctions get lost.  So much of what people believe IS autism, are actually co-morbids.  Without making the distinction between what is and isn’t “autism” we may be treating something that we should not be or are missing what we could treat, but aren’t.

Autistic neurology, like non autistic neurology needs to be separated from the co-morbids that affect some, but not all people.  Just as I am non autistic AND an (not active) addict, no one would leap to the conclusion that because I am both, ALL non autistic people are also addicts or that addiction is the same as being non autistic.  Yet, we see this kind of thinking over and over with autism and Autistic people.

Em on her pogo stick copy


My friend Kelly sent me this link to a post entitled The Obsessive Joy of Autism.  The piece is written by Julia who is on the spectrum and one of three contributors on a blog, Love-NOS.  I have only begun to read some of the posts, but it’s a terrific blog regarding autism and being autistic, but also about being human, our differences, our intolerances, our society and culture and how we hurt others with our judgements and by insisting our ideas of what is “right” should be adhered to by all.

“One of the things about autism is that a lot of things can make you terribly unhappy while barely affecting others. A lot of things are harder.

But some things? Some things are so much easier. Sometimes being autistic means that you get to be incredibly happy.”

Julia goes on to write – “Without this part autism is not worth having.”

I have written before about Emma’s joy.  We call it her bliss.  Left on her own she is in a state of almost constant bliss.  The kind of bliss we neuro-typicals work so hard to attain.  We take classes, read books, go to retreats and meditate all with the hope that we will be able to feel that bliss, no matter how fleeting.  Emma’s bliss is a part of who she is.  It is one aspect of her Emmaness. It is infectious and beautiful.

Julia writes – “If I could change three things about how the world sees autism, they would be these. That the world would see that we feel joy—sometimes a joy so intense and private and all-encompassing that it eclipses anything the world might feel. That the world would stop punishing us for our joy, stop grabbing flapping hands and eliminating interests that are not “age-appropriate”, stop shaming and gas-lighting us into believing that we are never, and can never be, happy. And that our joy would be valued in and of itself, seen as a necessary and beautiful part of our disability, pursued, and shared.”

My wish for Emma is that one day she could articulate her thoughts and opinions as beautifully as Julia has here.  Everything I am doing, every “study room” session we do is with that hope in mind.

For more on Emma’s journey through a childhood of autism, go to:   Emma’s Hope Book

Breaking Routines

I have written about Emma’s need for routines.  Like many children with autism, the desire to do the same thing, whether it’s watch Mary Poppins for the two thousandth time (not an exaggeration) or go to the Central Park Zoo, followed by a visit to FAO Schwartz and ending with a visit to the American Museum of Natural History, has an obsessive compulsive urgency to it.  Emma has gotten much, much better about being more flexible, but this Sunday morning Emma became fixated on going to the zoo.  Despite the fact she went to the Bronx Zoo with a caregiver the weekend before and the Central Park Zoo the weekend before that, despite the fact going to the zoo is less about leisurely strolling through the various artificial habitats and looking at the animals who reside there and very much about a specific route that must be held to.

During those increasingly rare times I have indulged Emma’s request to go to a place, like the zoo, I end up running after her while she zips from one thing to the next.  At the Central Park Zoo, given her preference, she will begin with a visit to the bat cave, racing past the exotic birds, stand for less than three minutes peering into the dark cave while saying, “Look at the bats!  Be careful, the bats will bite you!” before tearing off, regardless of what I might think to say to engage her in an attempt to slow the routine down, past the Colobus Monkeys and outside again to stare at some other type of monkey who reside on a few strategically placed rocks in the middle of a man-made lake.  Then it’s off to see the old, decrepit and now blind seal, into the penguin and puffin house, then back outside to watch the sea lions being fed.  If we’ve missed a feeding, we must wait until the next feeding.  Emma will patiently sit until the next show and then watch until the last unfortunate fish has been tossed into the gaping mouth of a lucky sea lion, before we are allowed to leave.

But Sunday is the day we try to do something together as a family.  Sunday is the day we attempt to take everyone’s desires into consideration.  Sundays can be difficult.  Nic, more often than not, wants to go see a movie or get together with a family we know who has children Nic’s age, Richard, being the amazing man that he is, is often game to go with the flow and I will do just about anything that doesn’t involve going to one of Emma’s favored haunts.  (Lest anyone think I’m a dreadful mother, may I just defend myself here and say I have been to the American Museum of Natural History several thousand times and would be grateful if I never went there again, literally, for the rest of my life, likewise to the zoo, any zoo for that matter and, while we’re at it, any carousel, anywhere in the entire world.)  It may sound harsh, but there it is.

So when Emma launched in about going to the zoo this past Sunday morning, I said simply, “Not today, Em.”

“Go with Mommy!”  Emma cried pointing at me.  “Just you and me, go to the zoo.”

It was heartbreaking to hear her carefully using the correct pronouns, requesting me, specifically.  Never-the-less I stood firm.  Then Emma brought out the big guns.  “Mommy talk to Daddy,” she cried.  “Mommy talk to Daddy about the zoo.”   It was a stroke of manipulative genius, pitting one parent against the other, knowing that where Mommy wasn’t caving, Daddy just might.  I actually had to leave the room, I felt such a welling up of pride.  She’s becoming quite the negotiator I thought, as I prepared for our “study room” session.

By the time Emma was halfway into our literacy session, the obsession with the zoo had ebbed and when we ended our session with sitting still for five minutes, the obsessive grip no longer held her.   We ended up having a lovely Sunday with Nic and Emma going to their gymnastics class, on the way to Union Square we happened upon an Occupy Wall Street protest, giving me ample subject matter to photograph, before meeting some friends in Union Square.  Emma and I made a brief visit to Barnes and Noble and then home, where we did some more literacy work before Nic and I made custom made hamburgers, cole slaw and french fries for dinner – inspired by the Food network’s favorite burgers show, which aired over the weekend – only ours were better.

Occupy Wall Street Protest

Em waiting for me

The Family – Who’s that devilishly handsome man (Gasp!) with those two adorable children?

For more on Emma’s journey through a childhood of autism, go to:   Emma’s Hope Book