Tag Archives: OCD

Obsessive Compulsive Urges

Posted on January 5, 2015 by | 39 comments

Increasingly I am uneasy about writing on this blog unless Emma is an active participant.  In other words, no longer can I sit down and write something the way I once did four or five days a week, even if it is about autism in the most general sense of the word, without Emma giving her views.  After all, this is her neurology (and her blog) and not mine.  I can write about how our different neurologies intersect, even overlap at times, but without her weighing in, I am left feeling so uncomfortable I just can’t do it.

So…

I just read Emma this paragraph and this is what she typed:

“You can continue, giving an example of how you cope with your obsessive-compulsive urges and ask others to share their experiences with this too.”

“Oh,” I said, a little surprised by where this was headed, “I wasn’t thinking about writing about that.”

But you see, this is the thing…  I have another blog, Where Art and Life Meet, and that’s the blog where I can write about whatever I feel like, but this one…  this one bearing my daughter’s name…  this one is hers, not mine.  So every time I write something on Emma’s Hope Book I am a guest and I’m hyper aware of that.  I am here only because Emma has given me permission to be.

So this morning Emma has asked me to write about coping with my “obsessive-compulsive urges” and so I will.

When I think about the things I become obsessive-compulsive about it is less about a particular thing and more about anxiety, worry and stress.  It is the process that occurs in my brain that reminds me of a scratch on a vinyl record causing the needle to skip, playing the same  few notes over and over again until someone comes, lifts the arm with the needle and allows the song to continue.  My mind gets caught in the skip and it can get stuck there with just about anything, a word misspoken, a misunderstanding, an idea of something I did, but wished I’d done differently, or something I’d like to do but haven’t, I can get stuck on a conversation, something that was said to me that hurt my feelings, or something I said that I worry might have hurt another or it might be something I want to do, but have not yet accomplished.

The worst times for my obsessive thinking are in the evening hours or late at night.  There is always anxiety, often stress, combined with worry and as I spiral, it often feels as though I were falling down through blackness, bouncing from one awful thought to the next, unable to grab onto anything to steady or break my fall.  It feels terrifying and there’s an aspect of feeling completely out of control and yet trying desperately to regain control of not just myself, but of all my surroundings.

Over the years I’ve learned some tricks that mitigate how bad things get with varying degrees of success.  The first is to remind myself as I’m falling into the blackness that these are just fears and feelings and not facts.  I can listen to them, but remind myself that they will wear themselves out eventually and I do not need to believe them.  Listening and believing are two separate things.  This sounds much easier than it is.  Sometimes reminding myself of this helps and I’m able to detach enough that I can calm myself but often it does not.

Sometimes the best I can do is identify the obsessive-compulsive thought, label it, accept that I’m having it and sit tight until it passes.  When I was in a particularly dark place many years ago, I would outright lie to myself.  I used to tell myself that for the next five minutes I would not give in to the compulsion, but after the timer went off, I could do whatever it was.  Then the timer would go off and I’d set it for another five minutes, promising myself again the same thing until the urges passed.

Some other things I’ve done that have been intermittently helpful are talking to others who understand and who are also obsessive-compulsive, meditation, writing, reading, taking a walk, exercise, or learning something new, like studying a new language, some sort of mindless activity like knitting or crocheting.

Obsessive thinking, the kind where your mind feels as though it were spinning out of control, where you go from one stressor to the next like a pin ball, ricocheting from one thought to the next then finally calming yourself down only to have your mind latch on to another dreadful thought, is a private kind of hell that if you’ve never experienced this, you cannot really have any idea what it’s like.  It’s a feeling of desperation, horror and self betrayal all rolled up into one.   And the self talk usually makes it worse because the self talk can be so brutal and cruel.

Emma has asked that I invite others to share their experience with “obsessive compulsive urgings” and so I am.  Please keep in mind sharing your experience with obsessive compulsive thinking and what has or hasn’t worked for you is not the same as advice giving.  Advice giving can be annoying, particularly if the person giving the advice takes on an attitude of superiority.  This is not the place for that.

ocdcycle

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Posted in autistic, compulsive, obesessive, Parenting

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The Blurring of Diagnoses

Posted on October 9, 2013 by | 32 comments

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.”  ~ About.com

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.”  ~ Helpguide.org.   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.” ~ Helpguide.org

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.” ~ Helpguide.org

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

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Posted in Addiction, Autism, obsessive compulsive

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Oddities, Quirks and Other Family Traits I’ve Come to Recognize

Posted on May 23, 2012 by | 15 comments

Let’s just say, for the sake of this post, that we all agree genetics play a role in autism.  (I know – many do not believe this, but let’s pretend we all do because otherwise this post will go off onto so many different tangents I may never get back to what I really want to talk about – inherited traits – and it will require a time commitment many of you may not have or want to give.  So let’s just pretend we agree.  Ten minutes, then you can go back to believing whatever it is you believe, which by the way, this post is not a criticism of, oh God, you see?  I’m already getting side tracked.  Suffice it to say, what used to strike me as alien about Emma, is, I now believe, a version of the genes that have been passed down to her.)  And that, as you’ve undoubtedly noticed, is one of the longest parenthetical sentences ever written.

I am going to keep this personal because I don’t have permission to review my parents various genetic traits, nor my husband’s, though I’m guessing he’d give me permission had I thought to ask before leaving for my studio this morning, but I didn’t and it’s too early to call my mother.  So this is going to be about things I’ve learned and see in myself that I identify with Em.  And by the way, this preface of over 300 words, is a perfect starting point because  I do not think in a linear fashion.  This is actually something I’ve been accused of, not in a oh-you’re-so-wonderfully-creative-in-your-weird-thinking kind of way, but more in a what-the-hell-is-wrong-with-you? way.  For more on non-linear thinking and autism, there’s a wonderful discussion on the blog Wrong Planet.

Sensory issues –  None of mine cause me tremendous pain as so many of Emma’s do, but I do have some.  One benign example is my auditory issues.  For a long time I thought I had a hearing problem because there are certain sounds I do not notice.  If someone calls out to me, but is standing out of my range of vision, I cannot hear them, much to the amusement of both Richard and my son Nic.  Until I get a visual and am able to see them both doubled over in laughter because they’ve been shouting my name for the past ten minutes while I, oblivious, continue to do whatever it is I’m doing, I have no idea anything is amiss.  My husband uses a ring tone on his cell phone which I cannot hear.  Suddenly he’ll start rummaging around looking for his phone and I’ll ask, “What are you doing?”

“My phone’s ringing,” he’ll reply, while I strain to hear his phone, only to hear silence.

I have a friend whose voice I cannot hear.  I literally have to put my head about three inches from his mouth in order to hear anything he’s saying.  I’ve had my hearing checked.  My hearing is all within what’s considered the “normal” range.

I have spoken before of my literalness.  There are certain jokes I just do not understand.  That in and of itself has become something of a joke in my family.  There’s a group of bloggers who participate in an ongoing “Special Needs Ryan Gosling” joke where they take a picture of the movie actor and then write something – like “Hey Girl, how about I deal with Joey’s sensory induced meltdown while you grab that bottle of wine I just opened for you.”  (I just made that up, but am not sure that would actually be a good one, because I don’t really get the joke to begin with.)  Not to be a total kill-joy here, but it’s not a joke I’m capable of understanding and I have to admit, I really wish I did, because all the other bloggers are having so much fun with it and I admit, I feel left out.  Reminds me of how I used to feel in high school.  Laughing along, but not really understanding what was funny.  Though I knew enough to not let on that I didn’t get it.  And I really do have a good sense of humor.  Really.  I do.  No.  Seriously.

For more than two decades of my adult life, I engaged in self injurious behavior.  My self injury was in the form of an eating disorder and in dermatillomania, also known as face picking.

I am obsessive and though I do not have OCD, (Obsessive Compulsive Disorder) I can be extremely obsessive and compulsive around a wide variety of things.  When I find something that interests me, often design related or subject matter, like autism, I become obsessive and will study and work for hours without realizing how much time has passed.  Jewelry design is like that for me and it helps that I have been able to disguise my obsession with it by turning it into a business.

In the past I have used words like alien and other in describing Emma.  But I haven’t found that thinking helpful.  As long as I see her as so very different from me, I abandon my instincts, my maternal knowing, my own quirks and feel almost constantly confused by so many of her actions.  When confused I rely on others who do not and cannot know my daughter as well as I do, to tell me what I actually already know.  Which isn’t to say that any and all advice isn’t helpful or is to be rejected, but more that I need to remind myself, Emma is actually a great deal like me in many, many ways and I need to trust myself more in knowing how best to help her by tapping into my own traits, obsessions and sensory issues.

I could go on and on about all of this, but the point I’m trying to make is that the alien analogy, rather than helping me help my daughter, has actually served to distance me from her.  When I am able to identify and tap into my own oddities I am better able to come up with strategies and ways to help her whether that is in her reading and writing or helping her tolerate frustrations or teaching her life skills.

What do you think?

Latest piece My Fear Toolkit published in the Huffington Post

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Posted in Autism, Parenting, sensory issues

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