OCD and the nature of autism

[watersprite]

I hope i am notnapalmed too? I didn't mean anything bad by what I said. I just feel that boxes and labels are only as valuable as one makes them. Authority figures make me distinctly uncomfortable.

 

[Slithytoves]

I haven't changed my position from the debate on the other thread--brain wiring precedes the behaviors learned from being wired the way we are.

While I think it's possible to have OCD or anxiety without Asperger's, I find it highly probable that having Asperger's will introduce psychological conditions

If putting out a video makes someone an expert, we ought put out a video!

Just to clarify, are you suggesting that OCD has no genetic basis? Or possibly that Asperger's can act as a trigger those of us with a genetic predisposition to OCD? I have a thought or two on this subject but I don't want to make any assumptions about what you mean.

What really scares me is that the Internet generation are such avid consumers of information from sources like the kid in the video. If something sounds good, many look no further. This sets a very bad precedent for their future as consumers of information. I did my darnedest to find evidence of this dude's credibility -- even just a sign that he is a psychology student -- and found nothing. Self-confidence does not Ethos make. The problems Nadador found would be lost on the average young person who watches vlogs like this for information.

So, this is a question I have. (1) Is it valid of me to accept the diagnosis, if I reject and eventually overcome the anxiety, which generates fear, which in turn generates anxiety. (2) Is it valid to hide in plain site (the empty cup I painted and posted) and not tell anyone of my disgnosis in order to protect myself from obsessing about my reactions to (their) reactions.

(1) Which diagnosis? ASD or OCD?

(2) It's as valid as you find it. I think that's subjective. If hiding your diagnosis reduces anxiety, you could consider it beneficial. The question becomes whether the act of hiding the diagnosis produces anxiety itself. Or so it occurred to me as I read your question.

I have had quite a bit of experience with dozens of brain professionals who missed their mark on me by not asking the correct questions and coming up with their own answers without sufficient research. Yeah,I really don't trust any of them now. I will continue to point out the lack of scientific method that is often used during some spectrum diagnosis/opinions.Are some of the AS diagnostics wrong? I don't know without any of the diagnostic criteria used in front of me,so I can only guess,which puts me at a loss too. Does that make me any worse than a sloppy pro?

I didn't read much of the other thread your post and A4H's refers to because it was too contentious. I agree with you here, anyway, that diagnosis isn't often reached by correct application of scientific method. A lack of consistency in the diagnostic process across practitioners and the inadequacy of available written tests are evidence of that. I wonder if some of your frustration has to do with the qualifications of your own assessors. Many doctors who are licensed to diagnose ASDs don't necessarily have a firm understanding of them, and the DSM (or ICD) isn't always much help on its own. Not only that, but it's my understanding that yours is a very complicated case because of your history of brain trauma. Did that predate your ASD quest?

I understand your anger, but I don't agree that all doctors are unworthy of trust. Mine was very thorough, even willing to accept the limitations of her knowledge when I introduced her to my less common presentation of Asperger's. And from what she's told me, many of her colleagues have been receptive to the findings from my case that she has shared.

I'm not sure if you were being sarcastic (Aspie alert!), but here are the current DSM criteria for the new umbrella ASD diagnosis and the Asperger's criteria from the previous edition:

CDC | Diagnostic Criteria | Autism Spectrum Disorder (ASD) | NCBDDD

DSM-IV Diagnostic Classifications | Autism Society - Autism Society

 

[Slithytoves]

I hope i am notnapalmed too? I didn't mean anything bad by what I said. I just feel that boxes and labels are only as valuable as one makes them. Authority figures make me distinctly uncomfortable.

I personally don't think anything you said was napalm-worthy.

 

[Nitro]

consider it beneficial. The question becomes whether the act of hiding the diagnosis produces anxiety itself. Or so it occurred to me as I read your question.




I didn't read much of the other thread your post and A4H's refers to because it was too contentious. I agree with you here, anyway, that diagnosis isn't often reached by correct application of scientific method. A lack of consistency in the diagnostic process across practitioners and the inadequacy of available written tests are evidence of that. I wonder if some of your frustration has to do with the qualifications of your own assessors. Many doctors who are licensed to diagnose ASDs don't necessarily have a firm understanding of them, and the DSM (or ICD) isn't always much help on its own. Not only that, but it's my understanding that yours is a very complicated case because of your history of brain trauma. Did that predate your ASD quest?

I understand your anger, but I don't agree that all doctors are unworthy of trust. Mine was very thorough, even willing to accept the limitations of her knowledge when I introduced her to my less common presentation of Asperger's. And from what she's told me, many of her colleagues have been receptive to the findings from my case that she has shared.

I'm not sure if you were being sarcastic (Aspie alert!), but here are the current DSM criteria for the new umbrella ASD diagnosis and the Asperger's criteria from the previous edition:

CDC | Diagnostic Criteria | Autism Spectrum Disorder (ASD) | NCBDDD

DSM-IV Diagnostic Classifications | Autism Society - Autism Society

I found my asd after I got hurt during my studies of my brain recovery. I got really intense with my studies about autism after we suspected I was autie.
I am not angry with anyone,only disappointed that average grades are tolerated as academia's requirements to sign their name the same way the best in the class does.
I did a lot of diagnostic work during my lifetime and had to continually educate myself to not get stuck in a rut. I gave stacks of cash to pros who I believe were in a similar mire. I passed the six million dollar man up a long time ago and have a lifetime pass to my brain issues. I thought that six million even with inflation would still net me more than the two small bionic parts I have
I will lose one of my trusted brain professionals during the next month as I have maxed out his abilities and others need his brilliance,but have gained a friend as a result of it. I do not have faith in a lot of the medical profession as a result of witnessing many mistakes after my accident. I have full trust in my neurosurgeon and continue to see him about once a year for my intercranial shunt inspection or adjustments.

My lack of criteria would not be what was used for the diagnosis,but rather the individual criteria in each case that were used as determining factors.

I suppose our entries we have on the spectrum give us a sense that we are each right in our own thinking and sometimes heads collide if we stray off the beaten path others follow. I do like to read debates and gather info along the way,but usually draw my own conclusion of what I understood as I study it more.

 

[On the Inside]

Great thread, I was thinking about this earlier, and I think I can trace back my obsessiveness to feeling that I don't have everything I need and wanting more than I have.

I used to be much more willing to try new things, but over time I started to feel like I was missing something very important to these new endeavors, and therefore, it will end in failure, or I will simply quit doing it. I would play and replay events to find that missing link, the one that kept me from getting somewhere.

All I could come up with was that my work had to be perfect, or I'd never reach that transformative goal.

And there I would sit in silent self imposed torture, staring at two lines of writing that should have been 5 pages hours ago. Get up and make another cup of tea........

Other things came more naturally to me, but still I felt so far away from where I wanted to be, or where I thought I should be, and I was never going to get any closer.

I beat myself up to the point where I had to strip away much of what I considered my self, in an attempt to reach that "neutral time" where I could sort this all out. It seems that I won't have the luxury of that neutral time, so I'm having to work it out in a different way.

I have been trying to set aside that obsessive perfectionism, and it is working in some ways, but there have been a few instances where I've felt guilty of abandoning something before it was really done, worrying that I should have done something differently, when what I did was do something good enough.

What I've been finding is that I wasn't missing something, I was just going about it in a way that wasn't right for me. But that was driven by this overwhelming desire for transformation, to become something other than what I am. That, I believe was the source of my obsessiveness and anxiety.

I'm picking up the pieces now, as I get further along the road to acceptance.

(by the way, I edited this four times. I'm done with it now.)

 

[ZackSkylar101]

I've been thinking through this recently as well. While I can't say that I have OCD (because I have not been given the diagnosis for it) I have had obsessive compulsive tendencies for a while and these got significantly worse a few months ago. Eventually the thing that I used to distinguish obsessive compulsive thoughts and normality was whether I had to participate in them or not. An example is that I like to switch off switches that have been left on when there is nothing plugged into them. I can choose to leave the switch alone (it may weigh on my mind a bit, but generally I can leave it alone) and it will be ok. Whereas there was a point where I didn't want to leave my room for several hours because I didn't know whether the light switch in the hall was on or off. That I think I count as more of an obsessive compulsive tendency because I wasn't able to control the loop of thought that came around that.

I do think the two can blend together quite often and this is a really difficult thing, but the general (albeit probably not the most supported viewpoint) is that the autistic tendencies, while I really don't want to not do them and it will drain me a lot to stop myself, I can force myself to stop some things if I really need to, while the obsessive compulsive tendencies, there is less of an ability to control what is going on.

But yeah, this is a really good concept to discuss, and so a tricky one where the answer isn't really known XD Yaaaaaaaaaaay XD

 

[SignOfLazarus]

The suggestions of improving ones OCD severity using avoidance, suppression, alternative/replacement response and rewards for any of the above makes me wiggy.

Basic principled research in OCD shows that at minimum avoidance and suppression feeds the OCD beast in cases of OCD, rather than complex symptom overlap or when having recurring periods of severity.

In this way, OCD can often be like quicksand, which is why treatment is often pretty specialized for anyone who has a moderate to severe case. It can remit for a time, even for quite a while and that is more common when comorbids are present.

I guess Im just suggesting if individuals have struggled for a long time with OCD, possibly find a provider who specifically specializes in moderate to severe OCD as their main clinical interest and has several different ways to approach it.

Also, if it is severly affecting your life, it obviously can happen that we fix this kind of thing on our own but public awareness doesnt really match up to the numbers on the matter. The numbers really tell us that if it is affecting your functioning you need help from people who know what they are doing.

something key to understand is, from a subjective point of view of an individual who may be autistic and experience OCD, there is a difference.

Autism has us do things out of expectation, comfort, things being "right". That can be generized to a lot of persepctives to suit specific people and situations but Im trying to be simple about it.

With OCD, everything starts with intrusive and/ or unwanted thoughts. About anything and everything. There is always a thought [obsession] and a response to that thought to compensate for it [compulsion]. With academic perfectionism for example- a thought/obsession would, obviously, center around perfectionism. The compulsion could be any of the following: rewrite a sentence over and over, freeze and try to "set" ones mind just right before writing, writing pages and pages and pages beyond what is necessary, avoiding writing at all, avoiding school... yes avoidance is a compulsion.

I deleted the post I had before because, honestly, I felt kind of like an idiot... but thats not anyone elses problem. Thats my problem [because yay OCD]… and this isnt criticsm really of personal experience, just I mean if things are getting to the point where they are affecting functioning it is more likely that you would get better relief from a provider with a specific clinic interest.

<3

 

[royinpink]

I wish I could keep up with you guys! I just got off work (since I'm on the other side of the world from most of you). I will start by tackling Nadador's post when I have a bit more time.

For now I just want to clarify something. I realize that I don't get a say in how the video is interpreted, and actually I wanted it to spark discussion, so I'm really happy it did. But I feel the need to explain how/why I came across it because a few comments seem rather disapproving of the vlogger and/or a therapist who would recommend such a thing? Unless I'm reading you wrong. So:

My therapist is a psychologist who specializes in ASD and has seen hundreds of people on the spectrum. She knows I am interested in psychology, and she is also very supportive of autistic/aspie self-advocates. Coming from her, in the context of our conversation, I take the video as a message to me that I am not going to find the answer I am looking for. Maybe that's not the message she intended, but it is the one I got. I was asking her about how I could differentiate all the different behaviors by etiology or which disorder they 'belonged' to and we talked about how the sense of guilt and dire consequences was indicative of OCD.

But I was trying to straighten out everything, you know, get it clear in my mind, and we were running out of time for the session and she had already stayed late at work for me and another client. So she sent me this link. I guess I got two things from it. The one I don't think anyone else got is this: sometimes the exact same symptoms belong to two different disorders, you have both, and you might never have an answer for which is the ultimate cause of your behavior (not to mention the definitions of the disorders themselves changing with new diagnostic manuals). The 'chain' of causation is systemic, not linear. (okay, that's me saying that, not her or the video ).

The other thing, of course, is a handy guideline for differentiating might be 'what feels like it's authentic to you and what is intrusive to you?'--the first one is ASD, and the latter is OCD.

More to come...

 

[royinpink]

In another fundamental mistake, the lad confuses the establishment of disorders with their diagnostic application in the clinical setting. The identification and description of a disorder is, in fact, a scientific process, so established disorders are valid enough, at least in the context of current knowledge. [And note that it was advancing understanding, not politics, that finally removed homosexuality from the DSM.]

I'm not sure those two processes are as distinct as you make them out to be. It is, after all, the application of diagnostic categories that provides feedback on the validity of the diagnostic criteria, which in turn should be the product of research. However, I take your point. The video is not at all clear about that process. I wasn't looking for that quality in the video, so perhaps I was more forgiving.

But by what standard are you suggesting that identifying disorders is a scientific process? I'm sure you know there have been a number of challenges leveled at the scientific methodology of the social sciences...and my sympathies are with them because the subject matter is inherently hard to be objective about--social science does, after all, study human processes of meaning and communication which are intangible, subject to interpretation, and dependent on sociohistorical context. But in my opinion, this hunger to be more 'quantitative' and reductionist to imitate the physical sciences leaves a lot of room for subjectivity in the social sciences. Either it's not ecologically valid, or there are too many confounding variables, or the whole experimental design is subject to the biases of the researcher in ways they can't forsee... I'm hardly original in thinking this. So I'm curious what your perspective is.

I'm not saying psychology hasn't made any advances--there's a lot of knowledge we have thanks to psychology, and I would be stupid to be so absolutist as to deny that. But when it comes to the classification of disorders, that is one of the less scientific aspects of the field. If you consider what disorder is in the first place...it's just abnormality. Abnormality is a line we draw between 'normal' and 'not'. How do we decide that? In the absence of clear biological distinctions, I'm afraid most disorders are labels on a collection of symptoms that most people find unpleasant and which seem to pattern together. "Impaired functioning" is a better way to draw that line than most other ways, but I'd hardly say it's scientific.

Sorry I wrote too much. I hope I don't come off as condescending. It is not my intention at all.

Any conclusions the lad in the video has drawn from this basic error are, therefore, too flawed to argue convincingly. In his statement that when stripped of symptoms caused by comorbidities, the autism diagnosis becomes “thin air”, he disregards a number of credible studies that demonstrate measurable neurological differences between autistics and NTs.

I think we have different interpretations of what he was trying to say at this point. My understanding was that he absolutely felt there was a difference between autistics and NTs, but that it becomes more nebulous.

For instance, I know Tony Attwood has suggested that the section of ASD criteria for rigid and repetitive behaviors and interests are not primary symptoms but rather caused by the anxiety and sensory issues that often accompany autism. Currently anxiety is only diagnosed as a comorbid condition. If anxiety is a comorbid disorder, does that mean the rigid and repetitive behaviors also become comorbid? Then there's the fact that for some on the spectrum, that anxiety might be neurologically based--I've been reading The Autistic Brain, and I remember a figure of about 25% of autistics having an enlarged amygdala, which is related to anxiety. So for this one key category of symptoms, there may be different, related causes. And then again that category is not unique to autistics. We know that people under extreme stress begin to stim and exhibit "autistic-like behaviors"--likewise for people who were deprived of affection and contact as babies, which is part of why psychologists first thought autism was caused by bad mothers. If you watch Harlow's monkeys, they sit and rock and are hypersensitive to sound and touch because they had no mom, not because they're autistic.

The point of all that detail is yes, he didn't explain it well, but I think this is what he is trying to get at--that the checklist of criteria match other disorders and have multiple causes and don't really capture what it means, or what it feels like, to be autistic. Until we have a biological explanation of what actually causes autism, I'm not sure it will.

It’s also pertinent to mention that he apparently doesn’t understand the concept of overlapping symptomology between disorders. For an example relevant to this thread, obsessive-compulsive behaviour is natural to Asperger’s. Specifics and degrees distinguish whether or not a discrete, comorbid disorder is present. Simple enough. I’ll leave this there.

I've mentioned this in my previous post, and others have some insights, but while they are commonly comorbid and I might agree with you that OCD is natural to Asperger's, I don't think that necessarily means that aspie rigidity is the same kind of thing as OCD. There is not just a difference in degree but a difference in kind between behaviors that are felt to be in one's control and those that are felt to be imposed, as a compulsion.

If we are to argue that there is no real science behind any part of the diagnostic process, from identification and description onwards, we must accept that the feeling of rightness we experience when we discover ourselves as autistics is invalid, and that the particular sense of kinship and understanding we find as fellow autistics is so, as well. We don’t all have the same comorbidity, yet still, we recognise our essential similarities, and our differences from the majority population. That, to me, says autism exists as its own entity.

I think he agrees that it exists. His problem is just with considering it to be a disorder, rather than a part of one's identity. If we could have a science of 'discoveries about people,' rather than disorders, perhaps he would be more comfortable with that. I probably would.

I see a disturbing trend in our community. It is quite arguable that our neurology is equally “healthy” to that of NTs...a simple variation. I see no problem with that line of thinking, when well-considered and adequately supported. However, rejecting all science, including psychiatry [imperfect as it is], to only embrace how we want to see ourselves is not only irrational, it’s arrogant. It’s certainly no way to get us better understood. So, I beg of everyone here to think hard before going that route.

I'm not sure what is so disturbing. I have no problem flying in the face of accepted science if they are wrong I don't think it's based only in wishful thinking, but in the fact that autistic people really do seem to understand their experience better than the NTs who attempt to study them. Sure, if you are scientifically inclined, you should study that and prove it and support it, but I don't see a problem with others speaking from their own experience. And to some degree, I feel the argument he is making is more philosophical than scientific anyway, so I'm not sure that would help. It's a question of at what point something becomes a disorder, which goes back to "what is abnormality," and if autism, whatever that means, is truly not what is causing us "impairment," then I don't see why it should be.

However, my personal opinion on it is more what I said in the last post. I appreciate the puzzle to untangle those different diagnoses, but I'm not sure if it's possible.

 

[Judge]

The suggestions of improving ones OCD severity using avoidance, suppression, alternative/replacement response and rewards for any of the above makes me wiggy.

Basic principled research in OCD shows that at minimum avoidance and suppression feeds the OCD beast in cases of OCD, rather than complex symptom overlap or when having recurring periods of severity.

In this way, OCD can often be like quicksand, which is why treatment is often pretty specialized for anyone who has a moderate to severe case. It can remit for a time, even for quite a while and that is more common when comorbids are present.

In a nutshell, that has been, and remains my experience with OCD. The more I resist it, the more prevalent it becomes.

Quicksand...excellent analogy.

This thread has morphed into some pretty interesting issues. Many which appear to be over my head. I can only relate to them in terms of how I relate to my ASD and comorbid issues. Whether one is the "chicken" and another the "egg"...I honestly don't know.

But I enjoy this discourse...wherever it goes. Y'all are cool.

 

[Spiller]

Of course sometimes the comorbids seem causally or environmentally linked, like how learning every social thing by 'punishment' for your mistakes is a recipe for poor self-esteem and depression, or how autistic thinking styles can be related: attention to detail makes us prone to noticing mistakes and being critical, all or nothing thinking can mean thinking something is perfect or crap, and associative thinking can lead to superstition ('I saw a blue car before I had a good day at school so blue car days are good days...'). Sometimes we just seem to be born with comorbids--and parents who have them are more likely to give birth to an autistic child.

This is a fascinating thread royinpink, I'd considered the possibility that I might have some OCD traits myself as this might explain my own sense of impending doom, my feeling that I'm literally going to drop down dead - completely separate from any suicidal impulses (which I'm thankful to be able to say haven't plagued me for a while) when 'The Rules' aren't being followed - it occurs to me that, ever since my incapacitating burnout two years ago, I've felt much worse in this regard, quite possibly because I'm not now adhering to a work ethic/timetable while I'm living on state benefits - no Rules - I actually find it more stressful not having the pressure of getting up, not running a business, not earning money and paying bills, more so than can be explained by the fact that I'm currently living at subsistence level. I find I keep looking at people, stressing that they have jobs and I don't, that they drive decent cars, go to restaurants, go on holiday, make plans for their future.. Stressing! Then panicking, then the overwhelming feeling of Doom..
I live daily/weekly to a routine, a timetable, as much as possible, prompted by the realisation of AS/ASD and this effective coping strategy, though it's difficult to fill the days - and I realise now that, while the routine helps me feel balanced, this feeling of being adrift in life, which also leads to feelings of sheer panic, is distinctly separate!

Can we be born with comorbidities, and/or are they instilled in us - as if by osmosis - by our parents? Are parents with such conditions more likely to have Autistic children or are their own conditions indicative of their own Autistic traits? I'm not sure if I'm just reading this too literally..?

I have been considering my own relationship with my parents lately and have realised that, while we have a close relationship, they've actually never complemented or encouraged me for anything I've ever wanted to do, or have achieved, in my life. I know I'm not subject to selective memory here, as I've actually just now been complimented on successfully installing a new boiler for them (I enjoy DIY) and was quite stunned to hear praise for a job well done.. at the same time though, I'm aware of the distinct feeling that I don't need it - they can, in fact, keep it! I've coped successfully all my life without it and don't require it now. I don't feel any bitterness, simply complete lack of concern for their opinion - I know I've done the job properly and that's all that matters to me.
My folks are also quite prone to catastrophic/negative/fatalistic thinking patterns and I realised that I had also developed this style of thinking from a young age, hence why my own application of CBT has worked so well for me - though I have been puzzled by how, underlying those unhelpful thoughts I've recognized, my core self-image - that which I recognise as Me, is also distorted/corrupted..
I realise now that I feel disempowered (not quite the right word, as I know now that I never felt empowered in the first place) for this lack of nurturing in my young life and I believe this has set me up to think that, no matter how much I've achieved over the years, I've never felt/believed I was adequate/successful/equal - I always feel I'm setting myself up for failure, I'm never good enough.. and yet, I know rationally that I've never really failed at anything I've tried.. except wolf-whistling and juggling perhaps..
What a contradictory state - rationality Vs self-belief.
Thank god for rationality!

(Edited only three times, heh)

 

[royinpink]

I would try to reply to everyone, but I think I've rambled enough already for one night, so I'll keep this one focused on the OCD aspect of the thread.

What I learned was to rip the perfectionism away from myself and get down to the survival mode of "I have to Do This Thing" - even if it is setting off all my unbalanced, inaccurate, unsymmetrical, unacceptable behavior etc., alarms in my mind.

That sounds kind of like exposure therapy, pushing yourself to do what makes you anxious. I don't know how I stopped some of the rituals. In particular I had a fear that people I felt strongly about could see me if I thought of them (like the image of them I saw in my thoughts was a window to the real them, and they could use it to look back at me). That one persisted awhile because it was so shameful to me that they could see me do anything if I couldn't stop myself from thinking about them. Even though I knew it was irrational, the fear was too overpowering. I think getting a friend in middle school helped? Like, I had more anxieties in my real life and this fear just made no sense anymore. In any case it stopped around that time.

At a neutral time, I wrote out a list of my dysfunctional thoughts, and countered each with a rational commentary on why it was patently wrong. I also made a list of comparative consequences...of not entertaining my OC thoughts v. of not completing different tasks I found problematic. I would keep both lists to hand when I sat down to write, and referenced my relevant notations each time my symptoms started to flare. I devised a system of rewards for successful suppressions of various magnitudes.

I wish I were able to do this, but I really don't see how. I've been able to reason with myself enough to calm down sometimes, but never enough to rid myself of the underlying tendencies. I'll keep thinking about it.

I'm glad you were able to find something that worked for you. Jelly of the PhD--my problems with this are a large part of what kept me from applying to grad school. Congrats

Basic principled research in OCD shows that at minimum avoidance and suppression feeds the OCD beast in cases of OCD, rather than complex symptom overlap or when having recurring periods of severity.

This is good to know...but I'm having a bit of trouble distinguishing the kind of suppression of compulsion that happens in exposure therapy from the kind that 'feeds the beast'. I would guess that the exposure therapy is more about letting yourself experience the anxiety first, and the lack of feared consequences, whereas suppression is more about suppressing both the anxiety and the compulsion?

Thanks also for the info that avoidance can be a compulsion. It certainly feels outside of my control! Frustratingly, this once got me labelled (by a computer) as "She exhibits a pattern of superficial guilt or remorse about her behavior, but she does not appear to accept responsibility for her actions." I think I was just being honest: yes, I feel very guilty, but no, I can't control it.

I've felt much worse in this regard, quite possibly because I'm not now adhering to a work ethic/timetable while I'm living on state benefits - no Rules - I actually find it more stressful not having the pressure of getting up, not running a business, not earning money and paying bills

Yes! I very much relate to this. I was encouraged to take time off work due to burnout and stress, but not doing those things is even more guilt- and anxiety-inducing. Eventually rest did work to relax my body if not my mind, but I imagine in your place I'd feel similarly.

But I enjoy this discourse...wherever it goes. Y'all are cool.

So are you!

 

[Slithytoves]

I am not angry with anyone,only disappointed that average grades are tolerated as academia's requirements to sign their name the same way the best in the class does.

My lack of criteria would not be what was used for the diagnosis,but rather the individual criteria in each case that were used as determining factors.

I suppose our entries we have on the spectrum give us a sense that we are each right in our own thinking and sometimes heads collide if we stray off the beaten path others follow. I do like to read debates and gather info along the way,but usually draw my own conclusion of what I understood as I study it more.

First quote: Gotcha.

Second quote: Those are such a mystery, aren't they? And it's not like it's considered appropriate to ask. If you do, you tend get a vague or patronizing answer. I've had problems like that with previous (and wrong) diagnoses.

Third quote: Agreed. I'm much the same way, when I think about it. I mean no disrespect to your experience. Just (compulsively) exploring.

I think I can trace back my obsessiveness to feeling that I don't have everything I need and wanting more than I have.

I think this is a very astute observation. It really struck a familiar chord with me. In my own case, what I usually feel I'm lacking/wanting is capacity; emotional, technical, intellectual, creative, perceptive, etc. etc. etc.

If I have the "aura" of knowing or ability and can feel it moving in me somewhere, some way, where the heck is the reality of it? When I need it?

What I've been finding is that I wasn't missing something, I was just going about it in a way that wasn't right for me. But that was driven by this overwhelming desire for transformation, to become something other than what I am. That, I believe was the source of my obsessiveness and anxiety.

Another really thought-provoking comment. You know, you are seriously good at describing your own internal experience in a very accessible way.

If a desire for transformation can trigger OC symptoms, I'm screwed. That characteristic might be the one thing about me that I doubt can ever be satisfied.

I really like the way you've observed and reasoned through your tendencies. I'm going to have to see what I can do with everything you said, here. Thank you sincerely for everything you've said in that post.

I do think the two can blend together quite often and this is a really difficult thing, but the general (albeit probably not the most supported viewpoint) is that the autistic tendencies, while I really don't want to not do them and it will drain me a lot to stop myself, I can force myself to stop some things if I really need to, while the obsessive compulsive tendencies, there is less of an ability to control what is going on.

I feel you on this one. Other people have said on this thread and elsewhere that it's the secondary characteristics and/or co-morbidities that are hardest to manage. They certainly are for me. My core Asperger's causes me almost no distress. The other stuff? Sheesh.

 

[Slithytoves]

Also, if it is severly affecting your life, it obviously can happen that we fix this kind of thing on our own but public awareness doesnt really match up to the numbers on the matter. The numbers really tell us that if it is affecting your functioning you need help from people who know what they are doing.

I agree with the overall suggestion that the best way to treat OCD (or any disorder) is to get specialized professional help. One of your statements didn't sit right with me, though. How can the number of successful OCD self-helpers be quantified? Like the most functional Aspies, those folks aren't as likely to present for treatment. Or if they do, the success they eventually have on their own isn't likely to be documented, since it would be most likely to happen after the treatments prescribed by doctors have failed.

A side note: It occurs to me that someone with an ASD might need a doctor who specializes in both ASDs and OCD. The way way we process and respond might differ from someone with OCD but sans autism.

I wish I could keep up with you guys!

The good news: That means you started a truly terrific thread!

But I was trying to straighten out everything, you know, get it clear in my mind, and we were running out of time for the session and she had already stayed late at work for me and another client. So she sent me this link. I guess I got two things from it. The one I don't think anyone else got is this: sometimes the exact same symptoms belong to two different disorders, you have both, and you might never have an answer for which is the ultimate cause of your behavior (not to mention the definitions of the disorders themselves changing with new diagnostic manuals). The 'chain' of causation is systemic, not linear. (okay, that's me saying that, not her or the video ).

The other thing, of course, is a handy guideline for differentiating might be 'what feels like it's authentic to you and what is intrusive to you?'--the first one is ASD, and the latter is OCD.

That's what I saw the first time I watched the video, before I read Nadador 's comments. Then I saw how badly the guy made those arguments, and the problems overshadowed a lot of the good I found in it the first time. There was a lot of shaky stuff in his narrative. Both facts and approaches. I can see what your therapist intended by sending you the link. Context is everything in personal interpretations, I guess. Thus debate ensues.

 

[Judge]

In my own case I'm inclined to believe that anything directly connected to Aspergers has to have a common denominator of socialization. That without being in the company of another human being, it's not likely to be an issue.

However that said, this does makes me wonder if social anxiety is truly a separate comorbid issue independent of Aspergers, or just a classic manifestation of Aspergers. Yet one can be diagnosed with social anxiety, and not even be on the spectrum of autism. Is this the medical rationale used to separate the two?

Conversely, my manifestations of OCD and Clinical Depression don't usually involve socialization at all. Yet I have OCD in different ways. Some reflecting a connection to traumas of my past, and others which just seem inherent to me.

Enough for me to argue both sides of such issues. Or simply admit to being confused.

 

[On the Inside]

I think this is a very astute observation. It really struck a familiar chord with me. In my own case, what I usually feel I'm lacking/wanting is capacity; emotional, technical, intellectual, creative, perceptive, etc. etc. etc.

If I have the "aura" of knowing or ability and can feel it moving in me somewhere, some way, where the heck is the reality of it? When I need it?

I'm glad you interpreted my needs and wants as perceptive, emotional, creative, intellectual, etc. rather than material needs and wants. I worried about that! (didn't lose any sleep over it, though.) I've always had more stuff than I can deal with. Another OCD symptom perhaps? Actually, I don't hoard, I get stuff and just don't always get around to getting rid of it when I no longer need it.

Another really thought-provoking comment. You know, you are seriously good at describing your own internal experience in a very accessible way.

If a desire for transformation can trigger OC symptoms, I'm screwed. That characteristic might be the one thing about me that I doubt can ever be satisfied.

I really like the way you've observed and reasoned through your tendencies. I'm going to have to see what I can do with everything you said, here. Thank you sincerely for everything you've said in that post.

I'm not certain that my desire for transformation triggered OCD, maybe. Anxiety up the wazoo, yes. I find it difficult to fully relate to the description of Obsessives and Compulsives, maybe it's denial. But if it helps explain something, I'll go along with it, especially if it is something that can be treated. My obsessiveness and anxiety sprung mainly from trying very hard to do what I needed to in order to get somewhere, and continually coming up short. I became fixated on the need for transformation as the only way I was going to make it. Every thing I would try to do became loaded with this need. The transformation I longed for was a result of a deep need to be recognized, understood, accepted, to reach my potential, to find my true place in life. I might even say to fulfill my destiny(?!!, there has always been a tendency for me to think there really was a reason for everything).

I'm relaxing my stance on that, thanks largely to being diagnosed on the spectrum, but still hope for change, if transformation is too much of a leap. So there is still something that may never be satisfied.

This is an awesome thread.

 

[SignOfLazarus]

I agree with the overall suggestion that the best way to treat OCD (or any disorder) is to get specialized professional help. One of your statements didn't sit right with me, though. How can the number of successful OCD self-helpers be quantified? Like the most functional Aspies, those folks aren't as likely to present for treatment.

Studies are done frequently involving various individuals, with various cohorts- at times one of those cohorts may be precisely that group which you describe. At times several of the cohorts may consist of those who have recovered or have improved symptoms sans treatment or at a time when they are not being treated.

How would one have any information other than anecdotal regarding the group of "most functional aspies"? The same way. Research studies.

If information were to only be gathered via treatment records, it would be useless as a whole picture because it wouldnt be the whole picture, and actually would be extraordinarily biased.

I thought we were doing the sciency evidence thing here as well, but no? I dont really get it but did feel the need to respond because Im crazy.

 

[AsheSkyler]

The suggestions of improving ones OCD severity using avoidance, suppression, alternative/replacement response and rewards for any of the above makes me wiggy.

Agreed. Avoidance should only be heavily considered in the case of allergies. Which leaves the big question on tackling whatever is bugging ya: sink or swim, or ease into the pool?

The one I don't think anyone else got is this: sometimes the exact same symptoms belong to two different disorders, you have both, and you might never have an answer for which is the ultimate cause of your behavior (not to mention the definitions of the disorders themselves changing with new diagnostic manuals).

A lot of disorders overlap each other. The root cause may be a different chemical, gene, or whatever, but the outward reactions look the same for a lot of them. I wouldn't be surprised if anxiety had a couple of branches in OCD.

I beg yer pardon! I did indeed gots it and I says so yesterpage.

 

[Nadador]

royinpink, my response to you will be so long as to require two separate posts. You seem to be open to a lengthy answer, which is excellent, as I'm too tired just now to discipline myself to be more succinct.

I'm not sure those two processes are as distinct as you make them out to be. It is, after all, the application of diagnostic categories that provides feedback on the validity of the diagnostic criteria, which in turn should be the product of research. However, I take your point. The video is not at all clear about that process. I wasn't looking for that quality in the video, so perhaps I was more forgiving.

No, of course they aren’t, quite. In total, there are actually three processes that can, in fact, be separated at least fairly cleanly. When I wrote, "The first point at which a disorder is interpreted by the broader medical community is the point of inclusion in a diagnostic manual," I implied by the use of the word "disorder" that a first process of identification and description by researchers has happened prior to this stage. But in the part of the video where the confusion occurs, the lad treats the first [identification-description] and second [acceptance-distillation into the DSM] stages as one indistinguishable whole. He then fluidly goes on to introduce the third stage [application in the clinical setting], and next levels charges against the second by disregarding the first completely:

“First you must understand how disorders like OCD and Social Anxiety Disorder are created. My choice of the word “created” may seem inappropriate, but allow me to explain my reasoning. Psychologists and psychiatrists, all around the world, rely on the Diagnostic and Statistical Manual to identify and treat a rapidly-growing list of hundreds of mental disorders. You would think a universally utilised diagnostic manual would allow treatment providers to objectively identify mental disorders, but this is hardly the case. If you were to seek mental health treatment from five different doctors, each using the DSM to determine you diagnosis, you could potentially receive five or more differing diagnoses and courses of treatment. There are no objective biological tests used to determine diagnoses. The DSM is the Bible of modern psychiatry…[To Kill A Mockingbird bit]…There is little, if any, objective science used in the formulation of this manual. Disorders and their symptoms are simply voted in by a body of mental health professionals who often have highly different opinions….”

Read the quote above with even just one, blurry eye and you’ll see that this mess is far more inaccurate than any simplifications I’ve done for the purposes of this discussion. And the lad goes on to confuse all of this further as his commentary progresses.

Of course you’re correct about feedback from the field “on the validity of the diagnostic criteria.” A proper diagram of the entire system would demonstrate continuing and complex interactions between practitioners, researchers, and the APA/NIH [in the case of the DSM]. This is how our body of knowledge and diagnostic manuals are meant to evolve. As both the lad and I pointed out, though...external, distinctly unscientific influences are introduced along the way, most strikingly in the DSM working groups and doctors’ offices. Yet the lad’s most damning attack [highlighted near the bottom of the quote] is actually on the researchers whose work he utterly discounts in his narrative. It is their science that undergirds the DSM.

More about the question of objective science in my answer to your next section.

I understand from your post about how you came to see this video that you wouldn’t have been viewing it through the same lens I did. I was coming to it cold, old [I'm 59], and with a freshly-won doctorate I earned in part by learning the twists and turns of this very process. My dissertation was grounded in an extensive metadata analysis, on the subject of a psychological disorder I happen to have, myself. I went to great lengths to understand how diagnoses are constructed, adopted, and applied. You may find it interesting, in the context of this discussion, that my central argument was that my pet disorder shouldn’t be considered a disorder at all. My viva voce panel included two sharply antagonistic clinical psychiatrists. I was told by my faculty advisor that he had never seen a longer, harder battle. A good time was had by all.

But by what standard are you suggesting that identifying disorders is a scientific process? I'm sure you know there have been a number of challenges leveled at the scientific methodology of the social sciences...and my sympathies are with them because the subject matter is inherently hard to be objective about--social science does, after all, study human processes of meaning and communication which are intangible, subject to interpretation, and dependent on sociohistorical context. But in my opinion, this hunger to be more 'quantitative' and reductionist to imitate the physical sciences leaves a lot of room for subjectivity in the social sciences. Either it's not ecologically valid, or there are too many confounding variables, or the whole experimental design is subject to the biases of the researcher in ways they can't forsee... I'm hardly original in thinking this. So I'm curious what your perspective is.

Let me preface this by saying that I am unusual, in that my pre-doctoral education was in a physical science, my doctoral education was a self-styled programme amalgamating both physical and social sciences [neuropsychobiology, a title brazenly stolen from a minor journal], and my current occupation has often found me working with field researchers in sociology and ethnography.

Now, my short answer to your question. “By what standard [am I] suggesting that identifying disorders is a scientific process?” By the only standard that can honestly be claimed by most any kind of science, which is imperfect.

What I have discovered, across the breadth of my experience, is that critics of scientific methodologies used in the social sciences have a well-guarded secret: Their precious Scientific Method isn’t hardly practised as the impersonal and objective formula they would have us believe. I have observed this for myself many times in the laboratory setting, but to offer you something other than “trust me on this,” I would direct you to hunt up a copy of Scientific Literacy and the Myth of the Scientific Method [Bauer et al, 1992]. In summary, the problems of interpretive judgement loom just as large in the physical sciences as they do in the social...judgement being subject to preconceptions, personal bias, conflicts of interest, matters of culture [scientific and otherwise], and many other factors that taint the research process. And it is ultimately by judgement that it is decided if the results of any experiment support a hypothesis or not.

The bottom line is, the argument that social science methodology is inferior to that of the physical sciences hinges largely on the premise that former actually has a pure standard to be met, and that all credible physical scientists adhere to it. That simply isn’t true. Indeed, I’ve seen good firsthand evidence that the pressure of the charges you describe often motivates today’s social scientists to be more faithful to Scientific Method than their counterparts, who level accusations relatively free of similar scrutiny except among their own. The real tragedy of this antagonism is that the aforementioned pressure is what’s largely behind the “hunger” of social scientists, “to be more quantitative and reductionist.”

Having worked on both fronts, my signature disappointment with the physical and social sciences alike is that their respective pools of researchers don’t often cooperate well, and I have come to believe much of this is for a willful and dishonest mischaracterisation of the work of the second group by the first. Related issues wrought havoc on my doctoral programme, so I find it fair to wonder how they might also be complicating the study of the disorders we’re discussing here, which stand with one foot on each side of the line that’s been drawn in the sand.

I don’t know if this was at all helpful. A fittingly detailed discussion of this subject, the kind you would probably like to see, would require much more time and space than I am afforded here.

I'm not saying psychology hasn't made any advances--there's a lot of knowledge we have thanks to psychology, and I would be stupid to be so absolutist as to deny that. But when it comes to the classification of disorders, that is one of the less scientific aspects of the field. If you consider what disorder is in the first place...it's just abnormality. Abnormality is a line we draw between 'normal' and 'not'. How do we decide that? In the absence of clear biological distinctions, I'm afraid most disorders are labels on a collection of symptoms that most people find unpleasant and which seem to pattern together. "Impaired functioning" is a better way to draw that line than most other ways, but I'd hardly say it's scientific.

There’s no denying the challenges of classifying these disorders. It’s why lines of investigation and diagnostic manuals evolve over time, if sometimes clumsily. It’s why new disorders are established, existing ones are reassessed and updated, and why old ones are sometimes discarded. It’s why the people who live with the symptoms and disorders classified need to be actively involved in these processes, beyond just presenting for and accepting treatment. It’s why many of us are here on AC. I find it as fascinating as I do frustrating.

Abnormality is decided in the sciences by numbers, first and foremost.

I excised the relevant comment, but be assured I find nothing condescending in anything you’ve put here. I’m quite enjoying this, though I’m a bit frustrated that we can’t just discuss it in person over a good bottle of wine. I think we’d get on very well.

I think we have different interpretations of what he was trying to say at this point. My understanding was that he absolutely felt there was a difference between autistics and NTs, but that it becomes more nebulous.

That was your understanding, but that isn’t what he said:

“What is the difference between autism and other disorders? Many autistic self-advocates cannot believe that autism is a disorder at all, and do not feel that autism should be treated. Instead, they believe that autism’s comorbidities are what should be treated. These comorbidities include ADHD, GAD, OCD, ODD, social anxiety, Tourette’s Syndrome, etc. Yet these diagnoses are semantic reflections of the symptoms used to define ASD. So if you remove these comorbidities in an attempt to isolate the characteristics used to identify autism, what are you left with? Thin air. The autism diagnosis is a house of cards. I have said before that I do not believe in autism…I believe in individuals. To be fair, I have encountered enough people diagnosed with autism that I can now say I know it when I see it, for the most part. But what am I seeing and identifying? It is nearly impossible to say....”

The clearest implication of his actual statements is that he appreciates no credible scientific evidence of autism as a true disorder, i.e., a distinct and genuine neurological difference from the norm. What he says before and after the highlighted comments is just more confusion.

If one is to criticise publically, best one do so with much more well-constructed rhetoric.

[Response continues in next post.]

 

[Nadador]

The point of all that detail is yes, he didn't explain it well, but I think this is what he is trying to get at--that the checklist of criteria match other disorders and have multiple causes and don't really capture what it means, or what it feels like, to be autistic. Until we have a biological explanation of what actually causes autism, I'm not sure it will.

Then he should have come better prepared to make that point properly. For his confidence, there is no evidence in his commentary that he’s done half the investigating you have, or with anything like your analytical skill. Anyone who advocates for a group should do so with much more care. All this inarticulate noise isn’t helping our community one bit. It may actually foster harmful divisions, and it certainly adds to the glut of misinformation. This is also an example of why self-advocates are so often dismissed by the clinical community, which is a serious problem for us all.

I've mentioned this in my previous post, and others have some insights, but while they are commonly comorbid and I might agree with you that OCD is natural to Asperger's, I don't think that necessarily means that aspie rigidity is the same kind of thing as OCD. There is not just a difference in degree but a difference in kind between behaviors that are felt to be in one's control and those that are felt to be imposed, as a compulsion.

I didn’t say OCD is natural to Asperger’s. They are separate disorders. I said obsessive-compulsive behaviour is natural to Asperger’s. Symptomalogical overlap. There is a point of demarcation after which the severity of traits indicates a full-blown disorder, but unfortunately, that judgment is ultimately left to individual practitioners in the field.

I think he agrees that it exists. His problem is just with considering it to be a disorder, rather than a part of one's identity. If we could have a science of 'discoveries about people,' rather than disorders, perhaps he would be more comfortable with that. I probably would.

Re "I think he agrees that it exists": Again, from the second excerpt I posted from his commentary, that’s not what he actually said.

Our disorders are part of our identities, the same as our sex, gender idenentity, race, etc.

How can autistics honestly embrace our difference if we won’t accept that we are measurably different? That’s all “disorder” is. Difference from the norm. This lad is assigning a value judgement to the term that isn’t inherent to it. I’ve seen this issue argued here before. Why it fails resonate escapes me.

I'm not sure what is so disturbing. I have no problem flying in the face of accepted science if they are wrong I don't think it's based only in wishful thinking, but in the fact that autistic people really do seem to understand their experience better than the NTs who attempt to study them. Sure, if you are scientifically inclined, you should study that and prove it and support it, but I don't see a problem with others speaking from their own experience. And to some degree, I feel the argument he is making is more philosophical than scientific anyway, so I'm not sure that would help. It's a question of at what point something becomes a disorder, which goes back to "what is abnormality," and if autism, whatever that means, is truly not what is causing us "impairment," then I don't see why it should be.

The science isn’t wrong, it’s incomplete. Most all scientists acknowledge this. You can find this sentiment stated variously in Limitations and Conclusions sections of any published research.

The trend is disturbing because autistics like the lad in the video encourage others to reject the existing science and its agents altogether, rather than spending their energy to actually improve the science, or entreating others to do so, by sharing their real experience of ASD. Did he, for example, suggest that self-advocates participate in the lay contingents that contribute to the revision of the DSM or ICD? No. He made complaints about the existing system, without offering any solutions but to embrace our nebulous “individuality”.

This is not how meaningful change will be made.