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.”  ~ 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

32 responses to “The Blurring of Diagnoses

  1. Many times symptoms of both physical and mental illness go untreated in autistics only because people assume everything is because of the autism. The fact that many autistics have difficulty with typical communication (even those who speak) compounds the problems.

    Recently I have become interested in the topic of autism and trauma because I see so much unrecognized and therefore untreated trauma in adult autistics. And then, even on the rare occasions trauma is recognized the talk therapy sorts of treatment are largely ineffective. I am confident we can learn to do better while in the moment not sure how…never-the-less am on the way there 🙂

    • Trauma and autism are such an important topic it seems to me and talk therapy, while helpful for some, will not be helpful for those who do not speak or are unable to rely on verbal language to express their feelings and thoughts. So glad you brought this up!

    • Judy, I agree with you. A lot of things are being chalked up to autism.

    • I am so glad of having found the autistic community, where people talk about these things. That knowledge enabled me to give support and advice to an autistic adult yesterday who said nobody was taking his depression seriously because he also has PDD-NOS. The autism centres don’t want to discuss his depression and have long waiting lists and only offer behavioral therapies, and mental health clinics who do offer clinical therapy say they can’t admit him because he is autistic and they have no experience with that. Add to that the fact that he talked about his suicidal tendencies in a detached, rational way, and you’ve got the picture. Rock and hard place much? But thanks to the autistic blogging community and the stuff you’ve all written on the subject, I could tell him that it’s not because he’s framing his need for help the wrong way, that it’s not because he’s a freak, that depression is a very common comorbid in autism and that he has every right to get treatment for it while keeping his autism in mind. To get heard.

  2. Love this post. Shared on my page…thanks.

  3. Over 30 years as an educator, I have seen this play out every which way…a list of diagnoses for one child that creates a tangled web which the adults become lost in, paralyzing or intensifying treatment models … and a one word diagnosis for a child who functions very similar to the other, with the diagnosis limiting the thinking of the adults. I have fell into diagnostic traps myself and I have failed to pull some children through the labels that were given. I have sought out diagnoses at times, thinking that one might act as a guide and it has done damage. The lines are certainly blurred at multiple levels.
    Without focus to the individual, without knowing and investing in the individual; their entire story, their perceptions, their intentions, their modes of relating and coping…we are lost to assist…no matter what the diagnosis(es) may be. Starting here allows us to design interventions and accommodations.
    Such an investment in resources, time, and brain power is a daunting task in most of our current medical, psychological and educational systems…even in some of our very well intended families. And the science keeps changing, also complicating efforts by diagnosticians, service providers, and families.
    The autistic individual must be the focus … the ultimate, respected guide.

  4. OCD, addiction and autism. I’ve got two out of three.

    Seriously, I was an active alcoholic and drug addict for many years, and still have to deal with my addictive/compulsive behaviors (sugar anyone?). I also have OCD. It isn’t crippling, though it could have been if I hadn’t caught it in time and modified my behavior. I was a compulsive “arranger” as a kid. All my toy monsters and soldiers had to be precisely positioned in relation to each other in order for me to feel comfortable. Later I began to enact repetitive rituals. If I didn’t complete the ritual, I had an overwhelming feeling that something horrible would happen. There was a whole jinxy, superstitious quality to it. Today I still have one compulsion I can’t seem to break completely: When I’m writing, I have to make the paragraphs look “nice.” No final lines with only one or two words (they’re called “widows” in typography). This is NOT an advantageous behavior for a writer. I just added this sentence so the paragraph would look better!

    Emma has incredibly powerful OCD behaviors. When something isn’t “right” she will have a complete meltdown. I totally get it. And I feel so sad about this because I know there is nothing fun about it. I’m not looking for a cure for her autism, but I sure hope that her OCD eases up in the years to come.

    • I wonder if what she is experiencing isn’t different than OCD. I don’t know and keep wondering if it’s a desperate desire for routine and sameness because of the chaos that makes up her world sensorily. I wonder if her need for certain things to be just so is less OCD and more about staving off sensory overload. I don’t have OCD so I don’t know what that’s like to feel if you don’t do something, something terrible will happen, I hope that isn’t her experience. And I guess we won’t really know until she is able to communicate the specifics of her actions and thoughts.

      • I would say a desire to have the same routine. Routines are wonderful. Routines help make sense of the world. I wouldn’t force her to break “her little” routines. In this chaotic world it is always good to know somethings work as you wish and expect them to work. It is very comforting.

      • I’ve always found that autistic behaviors that look OCD-like have a very different motivation and feeling to them than real OCD, though as you say it’s possible for both to happen together and be wrongly ignored. OTOH, some people may assume it’s no different and wrongly treat it. But for an autistic person these lining up and routines are usually positive things—not a sense that something terrible will happen if you don’t, but it just feels more right and looks nicer if you DO. Sort of a personal feng shui, though without implied mysticism.

        An analogy I often use is that an OCD hoarder, a bipolar person in a manic phase, and an autistic might each impulsively overspend on a ridiculous unusable number of, say, model airplanes, but each would have different reasoning. The person with OCD would have, perhaps, an irrational fear of a shortage happening, the bipolar person would, if they even remembered buying them at all, just have thought it seemed like a really good idea at the time but not know why, and the autistic person would have an attitude pretty similar to any normal hobbyist except in intensity and impulse control—they may regret overdoing it, but they really did want those things.

        (My apologies, BTW, if I’ve oversimplified anyone’s illness in the above—it’s just based on what understanding I do have).

  5. Stephanie James

    I have seen harm done by doctors who work alone and do not consult with a team (that should always include parents and the individual) to hear other thoughts and opinions about behaviors. This has led to misdiagnoses and too many different meds, with resultant escalation of behaviors. Judy is correct and I am so appreciative that she is looking at autism and trauma. Doctors need to put away egos and look at the whole person they are suppose to be treating, seeking outside advice and support from other professionals before putting labels on people that can cause terrible harm. And Julie, thank you for continuing to learn and supporting individuals’ needs.

    • Right. Great points. Thanks Stephanie!

    • You’re so right! In that sense I’m really glad that my diagnostic process included interviews with three different psychotherapists and one psychiatrist, even though it felt like I had to explain the same things over and over. But at least it’s not just one person’s opinion that will give me my diagnosis. (The psychiatrist told me yesterday that they weren’t discussing whether I had autism, but what kind. I wish we had the DSM-V here!).

  6. Another beautiful post, in what I have come to realize is in your inimitable style of honesty — which promotes honesty in your readers. I do feel that gestalt language processing is one of these co-occurring characteristics. Most gestalt language processors are not autistic, but it has become all-too-common for kids who use echolalia to be labeled autistic *because of* the echolalia — and then their language is chalked up to being secondary to autism (and, though it’s not always stated, something that cannot develop naturally). What a double whammy of cart-before-the-horse meets chicken-and-egg thinking! Our kids might be gestalt language processors naturally, and may remain echolalic longer than kids who have more intact sensory-motor systems, but our kids can — and do — develop productive, self-generated language! Thank you!

    • I actually hadn’t thought about gestalt language processing in all of this… or for that matter how some kids are introverts and how that also easily becomes folded into an autism diagnosis. If one thinks about it the list is pretty lengthy.

  7. You make an excellent point here about the need to understand the underlying cause of behaviors and diagnose correctly to ensure that the appropriate response is forthcoming.

    • And it goes even beyond medical diagnoses, right? I’m sure you’ve had the experience of people who assume something about you when they learn your autistic. All kinds of stuff get attributed to autism that just are not true.

      • That is very true. For example I’ve had any number of comments along the lines of “You don’t look autistic” which I find rather insulting since it has taken years to learn so many coping strategies. I replied to one person that it doesn’t come with a sign attached to my forehead! But it’s not only autism: an acquaintance of mine who has cerebral palsy has also suffered similar treatment based on how people assume that condition presents.

        There are popular preconceptions associated with most conditions and illnesses, but even something as common as a headache presents in different ways in different cases.

  8. Hi, I have never posted but have really enjoyed reading your posts for the past few months. I am a recently retired educator and I have a 20 yr. Old nonverbal autistic daughter. She has always had severe GI problems but no one believed me because she thrived physically, but she had mild reflux and cried like she was in pain. Finally, she started throwing up and had numerous xrays that showed up nothing and an endoscopy was too invasive for Dr.’s to commit to at the time. In 2006 she had a stomach bleed. She had strep throat and fever and the Motrin caused the bleed. The Dr. finally felt an emergency endoscopy was required immediately. This test showed her esophagus was perfect which was surprising even to the Dr., but her stomach had like a million pin prick ulcers that had been caused by too much acid that really couldn’t be explained. The bleed was considered chemically induced and I had to give her prevacid twice a day. Fast forward til 2008, 2010 and 2012repeat endoscopies. Mostly normal some gastritis. No real help for the perceived pain. I took her back to the internal medicine Dr. 2011 complaining that she was drinking everything in sight. No bottles could be in fridge that she didn’t open. I thought maybe she should be checked for diabetes, but he said it was ocd and did not even check her sugar. He put her on zoloft. She gained about 20 pounds and her dad threw it away. It did not really help the drinking compulsion, but she stopped crying with her stomach, so this led me to believe that she must have severe anxiety that had caused all that acid. I observed her more and noticed that she has little feet movements that she does often enough to maybe be ocd but not constant, it looks more like she is entertaining herself, so… Recently a new Dr. Put her on Luvoox for ocd. I had to wean her off her stomach seemed to get worse and some behaviors like trying to jump out of the car while I was driving. Never before occurred but a flight response is how she reacts to pain, so .. She has had good notes from school this week so hopefully I am on the right track, but I also feel like I basically read her mind from observing her so much that it takes something drastic like the stomach bleed to get anyone to believe me. Co morbids definitely need to be observed/ studied to get the right help for each individual and most Dr.’s I have access to do not seem to have time to invest in all the differences/ needs of my daughter. She looks good, I take care of her, she doesn’t have a fever so she must be okay or as well as expected seems to be the norm for the majority of Dr.s in recent years. I have found a handful of compassionate Dr.’s but they moved out of state, so I continue to read, study, learn and fight to help my daughter have a voice that is heard.

    • Oh Diane. How awful. I cannot imagine how terrible all of this must be. There have been a number of articles over the past few months about Autistic people being denied medical treatment because they’re Autistic, as though that was a reason to deny anyone anything.

    • Diane, I’m glad that you brought up medical/physical co-morbids. My son is 4 and has some GI issues (leaky gut, gluten/casein/peanut intolerance, intestinal irritability). During one really bad flare up (bowel movements 6-7x/day with wierd consistancy) I called his regular pediatrician. She said we could do stool testing for the bugs that are going around now. I knew that the tests would come back negative, and they did. No one there had any other advice. So, I took him in to his doctor who specializes in autism. He suggested dietary changes (nope), an anti-fungal for yeast (nope), and an anti-biotic (bingo!). Cleared it up for exactly 10 days. He is still having some issues, but not as bad. We are going to go back and see if there is anything else we can try. Anyway, my point is, a lot of doctors who are not well versed in co-morbids with autism either don’t know how to treat issues, or don’t believe that there are real issues. As a parent it is hard to keep going and searching for answers when doctors are dismissive or don’t know what to do.

  9. Autism and trauma is a tough one I always think. To be autistic, even in the safest and most nurturing of homes, is often still to deal with one trauma after the other. Mine was not one of those homes but still many of the things I encountered and still encounter while not looking especially traumatic to the NT eye were.

    I longed for school but kindergarten was such chaos I spent pretty much the entire time trying to get away from my classmates and my teacher to be repeatedly dragged back. This to an observing teacher would look like normal discipline and order keeping and when an NT classmate tried the same because they were already in trouble I doubt they experienced it as traumatic but expected.

    Hardly anyone thinks of fingerpainting as traumatic. If you can not bear the feel of the low quality newspaper roll ends your school supplies to the primary division who will not after all be producing great works of art and someone literally forces you to touch it much more than you would if you could bring yourself to (it was a easil, when it was my turn at that station despite it never working I would first plant myself under them)

    This week I cannot bear people at all. My casemanager views what caused it as over now and thus so should be intolerance of all things human but the damage is done, (Sadly my intent to avoid them was ruined by a friend but oh well) She views it as an administrative error but it left me keening in a way I have not since my best friend took her life and my dog joined me. This is not undone by an email.

    Traumas large and small. Knowing you are a source of emberassment or pity to many family members, having to enter a room full of people you do not know and perform a familar role but terrified you will not be able to speak and in the worst case scenario not be able to move. That one awaits me later tonight as I stupidly, knowing my friend had a big gig with her band and not enough percussion said if they were willing to accept I would just rehearse and play that I would help… Now I live in dread so great I am afraid if I eat I will throw up and if I don’t I will pass out.

    I feel like such a fool for not holding to my I can’t really do bands three days in a row and then go to temple. (entirely true so now what?) excuse but since I use words in a very precise way and my definition of honesty is much broader I cannot say I made a huge mistake thinking i could do this because all the average person will see is am I capable of learning the music (which I have not too much doubt about) . The people I might have to speak to, The ones I might have to touch, how they will smell…. That the wood may be worn off some mallets to the point where it is as aversive as that low grade finger paint paper… the list is long.

    Is it legitimate to call those things trauma or not? They feel as bad to me as things that everyone acknowledges as traumatic but some would shrink from the notion that simply to live as autistic is traumatic as it is hardly compatible with some other aspects of the autistic movement.

    • I don’t know that trauma can judged by what caused it. I mean trauma is the end result, no matter the cause, therefore whether your trauma is caused by finger-painting or by abandonment, it’s still trauma. Besides someone who has heightened senses will find some things intolerable that others wouldn’t notice. That was one of the things I loved about the Henry and Kamilla Markram’s Intense World Theory of Autism – it was the first time I read about the idea that as infants so many Autistic babies are literally under siege by sensory overload.

      • That is why you were awarded your sash of high functioning Ntness though. Most people do not understand it. I have tried to explain it so many times and some not only don’t understand it but because it gets in the way of their own agenda for their child can’t let it in at all. The world can be a chaotic nightmare not just for an infant I am afraid. I don’t know what percentage of autistic people slide around so much as to functioning as I do but last week I was back to some feelings and behaviours that had vanished by age 6 and while I am used to losing speech at times and used to being overwhelmed to have it so chaotic and overloading it had to be hid from was frightening, Along the way you convince yourself you learn to manage some of it.

        I had hoped to avoid the world entirely at least until tomorrow night but no chance of that as it turned out.

        The point which one day I will learn to get to faster is people certainly do judge and draw lines about what constitutes trauma.

        • *ties on sash cheerfully*
          Gareeth – i know of at least a couple other people who also slide forward amd back in their ability to cope depending on their level of overwhelm and stress.

          All the surgeries, the meds, the changing of rooms, nursing staff, doctors… All that you are having to deal with… I can only hope things slowly calm down, little by little so that you can begin to heal.

  10. This is a huge issue. I don’t know why various illnesses or diseases are lumped with autism or each other. They are not exclusive to each other and the clinicians know better to separate them and treat the illnesses and the diseases separately and help an autistic person find solutions to make things better for them. The world of psychology and psychiatry need to re-learn autism and change their entire ideology about it. We need to just take the person, leave any diagnosis behind and learn more about that person and find solutions that work for her/him. That is how I work with my clients. We work with their strengths and develop them. Anything they are short on that can’t be improved upon we find other ways to accomplish it. There is always more than one way to do do things. I also use AI, Appreciative Inquiry with families with various neurologies. They initially come because they want to fix the autistic member and they leave realizing they are each a different human who needs different support. When there is an understanding and compassion for each other and acceptance of the other member completely a lot of the OCD like symptoms disappear and turn into lovely routines. I think people are really harsh on each other, very unforgiving and rely on the labels too much. We are each a human with different needs and desires and need different supports to go on our journeys. We just need to concentrate on that. If we happen to be an autistic so be it, an NT that’s okay too. And of course we should seriously look into getting a unicorn for Karla McLaren.

  11. I am sorry, I keep coming back to this. I should be out there getting ready for a meeting I am leading but this is weighing very heavily in my head. This whole thing is so simple, really simple. If we really love the people in our circles and vow to support them no matter what, the labels won’t matter. It’s about knowing the person, accepting the person and being there for them no matter what. And of course accepting that 2 different things aren’t mutually exclusive. If peel the layers of a person to find out who they are and what they need we can address them one at a time with their guidance and insight. It is a team effort with the person in question. Finding out what their needs are to be supported better should be a basic requirement. If we can spend millions to research a target group to lash an advertisement on them to sell a product we can certainly research best ways to support each individual and their support members to equip each with the right tools. It’s about having the right skills, the right tool box if you will for the person to be supported and the people who are supporting them. Open communication with whatever means is a must but, before that there must be a commitment do the right thing, to be open minded, to be ethical and to be loving unconditionally. Thanks again Ariane for opening the conversations for the betterment of all of us. Now, I must run. Have a great day everyone.

  12. Pingback: In the News – October 2013 | The PsychoJenic Archives

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