Motley Moose – Archive

Since 2008 – Progress Through Politics

Dispatch from the Island of Misfits

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I now have a diagnostic mental health label. Hooray for me.

I don’t doubt the label is correct. It almost certainly is. It’s just that I’m a little angry that something I knew about myself, about my own strengths and weaknesses, had to have a label applied to it just to be honored. It was necessary, and I can even understand intellectually why it was necessary. But the fact is that I felt compelled to seek a formal diagnosis when I don’t really feel disabled.

Mostly, I’m frustrated that it should matter so much in my situation.

We’re a society obsessed with labels. We group people by every category and attribute imaginable, then set up systems so accessing services and protections depends on these labels. Want to be protected from discrimination? You had better be labeled in one of the ‘protected classes’ of the applicable statute. Want special educational services? Better be labeled with a qualifying disability.

Diagnostic labels can be incredibly helpful. They can foster understanding, direct treatment or guide rehabilitation. But none of those things is really the case with me. In my case, the diagnosis is strictly to allow me access to the protections of the Americans with Disabilities Act of 1990 as amended.



I have the syndrome soon to be formerly known as Asperger’s. I thought I’d likely be classified under the new Social Communication Disorder come May, which as its name suggests focuses primarily on the interpersonal symptoms. I thought this because I don’t recognize in myself the other ‘symptoms’. But after formal diagnostic screening, the psychiatrist determined that I will fall under the broader Autism Spectrum Disorder umbrella.

A little surprising especially since, as I’ve said, I never considered myself to have a disability. I just always felt like I belonged on Rudolph’s Island of Misfit Toys (I have always identified with those toys, even from childhood).

I don’t, for example, have any pronounced area of interest as is common in Asperger’s. I have learned, however, that this is less common in women than men.

I have a number of what I’ve always call nervous habits – things I do to soothe myself and sounds I make that I find comforting. But these are smaller motions. I had always thought of Asperger “stims” as larger, more pronounced things. It turns out during my diagnostic testing, however, that the psychometrician (a new word I learned in this process) identified several qualifying behaviors. I was surprised, but she’s the expert.

It also turns out that my myriad sensory issues are also a qualifying factor, as is my love for producing clicking/rattling sounds with objects around me (this one can drive my otherwise tolerant family a little nuts). And finally, I’ve learned that my mortifying tendency to melt down into tears when overwhelmed, even in public, is common (though far from universal) in women diagnosed with Asperger’s.

Of course Asperger’s disappears in May. Here’s how a writer in the New Zealand Journal described the upcoming changes to the diagnostic criteria:

Asperger’s syndrome turns out to have been, in many cases, a fancy name to describe people who are rude and can’t be bothered to change their ways.


I’m not sure how I feel about the diagnostic change. I haven’t given it much study, since I never thought it would really matter to me. On the one hand, the difference between a diagnosis Asperger’s Syndrome and Autism apparently hinged primarily on early childhood verbal skills which like everything else with this disorder apparently range on a spectrum. So there was no real difference in adulthood between a person diagnosed with Asperger’s Syndrome and a person with high-functioning (hate that term) Autism who developed their verbal skills a little later. So score one for ‘single diagnosis’.

On the other hand, there is a significant difference between someone with mild symptoms like me and what most folks think of as ‘Autism’. Say to someone who knows me, especially in person, ‘she has Asperger’s Syndrome’ and they’re likely to say ‘I can see that’. Say ‘She has Autism’ and the reaction is likely to be ‘Say what? No way!’ ‘Autism Spectrum Disorder’ is such a broad category now that it really doesn’t tell you much.

But I digress…

I don’t mean to be rude, heaven knows, or anti-social. But I am: I’m socially awkward, never knowing what to say, not realizing I’m interrupting or dominating the conversation, unable to read peoples faces or understand their moods. I’m much better now than I was when I was younger; I’ve learned a lot of social rules that I follow, but I still can’t read situations and cannot make light chit-chat. A  few minutes on the phone with even the those near to me wears me out – and I have no skill at tactfully ending the conversation. Gotta go is the best I can do.

This may come as something of a surprise to folks who deal with me primarily on line. The internet levels the playing field with regard to social communication: Here, no-one can use body language, facial expression and tone of voice as guides. Here, I have time to think of something appropriate to say, and it’s OK to just end the conversation when I haven’t got anything. And honestly, I’m smart and I’m 50. I have had years to learn to be less of a misfit, to act in socially acceptable ways. Other than the fact that I have no friends that I didn’t first get to know on the ‘net (none, zero, even met my husband on the GOS) my social issues aren’t horribly obvious.

So why, then, would I bother with a diagnosis at age 50?

In August 2011 I started a new job. I was a success at my old one, got the work done, kept mostly to myself and communicated with civility and professionalism when necessary. That’s all they expected from me socially.

At my new position, I’m still great at the actual job. What I didn’t learn until after I started is that they are quite a touchy-feely group, with a heavy emphasis on personal relationship building. Although my job requires no customer contact and I hadn’t had any run-ins with anyone, it didn’t take long for me to get feedback that I wasn’t being seen as ‘nice’. “Oh, dear heavens,” I thought. “What have I done? Who have I offended?”

No-one, it turns out. I just stink at touchy-feely. I was being seen as standoffish and unsociable. Not that I was ‘un-nice’, just that I wasn’t friendly and social enough.

I’ve been working with my manager for a year, addressing specific behaviors that I can change – in other words, tell me the unspoken rules that I’m breaking and I’ll do my best to follow them. But if my core social abilities haven’t developed in 50 years, I doubt they’re going to now. And the stress of all this has brought what I always called my nervous tics to full flower. I twirl my ring on a loop of my thumb and middle finger (I love the motion and the rattling sound it makes; if I’m not paying attention I’ll raise my hand and do it by my ear) or rub my fingers on my thumb nail (something about that smooth feeling soothes me – when I’m alone I’ll rub my thumb nail along my upper lip).

So the more I try, the ‘odder’ I get. I get it. I’m a social misfit. I’ve always been a social misfit. I don’t even care – I just want to be left alone about it.

Enter the ADA. With my handy-dandy new label affixed, I am in a position to ask my employer to accommodate my social limitations as long as they don’t negatively impact my performance (which she has acknowledged that they don’t). In other words, I can get her to back off with the relationship-building developmental goals and the constant stress on that issue.

My symptoms are at the milder end of the spectrum, obviously, and I don’t tend to stand out in a group (actually, I try to avoid standing in a group at all, I get sensory overload so very easily). Instead, I melt into a corner. So there’s the source of my resentment: why do I need a label to just let it be OK for me to be me?


  1. Nurse Kelley

    I can’t pretend to know what it’s like to live in your skin, but I know a thing or two about your manager. “Nice” is not a word a manager should be using in this context, nor should she make assumptions about her employees all being the same. I’d say there is a problem at your job, and the problem is not you.

    She’s made you feel bad about yourself, and I’d like to give her a not-so-quiet lesson in appropriate employee relations.

    We’re all weird, in one way or another. All different, and all spectacular.  

  2. Attributing your very real inabilty to interact according to a textbook definition of “normal behaviour” to “rudeness” is more than rude … it is damaging to you and those who you interact with.

    It is good to have a diagnosis and also to get your employer to back off so you can just do the job you were hired to do.

    When I worked in cubicleworld at a bank, the many odd behaviours of the computer geeks were ignored. If the bosses had tried to make us interact with humans the same way a bank teller did, morale would have suffered tremendously.

  3. blue jersey mom

    you at NN09. Of course, I am not very good in social situations either. I do, however, understand the importance of a diagnosis. I spent 6 years on our local school board. Kids with disabilities needed a diagnosis in order to get the help and accommodations they needed. Many thanks for the diary.

  4. LeftOverFlowerChild

    Grrrrr and some more! It’s hard enough dealing with a disability, personally or as a caregiver–but when the process is dissed, well it’s beyond frustrating.

    I’m glad to hear you have some kind of resolution freeing you from a difficult situation. Labels are an unhappy, but necessary evil of getting help through a diagnosis. I still struggle with the “mental retardation” part of my daughter’s diagnosis. Those two words are so heavily seasoned with negative reactions, but in order to get her services in place we had to agree to the label. It’s what best for her despite how I may feel about it.

    I have a few people in our support network all out of sorts because a school official has suggested children described as “on the spectrum” are really just poorly behaved children with parents seeking comfort for their poor parenting skills.”

    Great, so now folks with autism and autism related disabilities are just acting out. Peachy keen.

  5. cassandracarolina

    are just doing our best every day ro turn our “bugs” into “features” by using them to fuel our writing. A diagnosis wouldn’t change a bit of that.  

  6. jlms qkw

    says i need to pursue official testing for the autism stuff.

    he’s my adhd aspy boy w/ some other problems now . . .  

  7. ursoklevar

    As others have said, your writing is nothing short of brilliant, and I’m inclined to say the same about your awareness of how you feel and think about yourself and your interpersonal relations.

    I’m damn glad your stinkin’ testing and labeling is finished, and that the end result at work will be to get the bureaucracy off your back.

    My own label is pretty simple: chronic depression. Meds sometimes work and sometimes don’t. Although I have a goodly number of close friends in “real” life, I, too, find it less stressful to interact with people online, where I don’t have to summon the sometimes nonexistent energy to rise to the occasion.

    Again, thanks, iriti, for sharing so much of yourself with us. It has given me the courage to speak up here.

  8. Mnemosyne

    it’s beautifully written and important for people to read.

    Reading the description of the traits you’ve listed, I and almost everyone I know do/does all or most or at least some of those. Sometimes, often, all the time, what does it matter.

    I have always suspected that the neat little pigeonholes that shrinks want to put people into are things that were dreamed up by people who had no contact with the real world. And are applied by same.

    And your boss is a jerk.

  9. Khloe

    But the reason you had to jump through so many hoops still bothers me. I do hope your boss learned something from all of this.

    Beautifully written, as always.  

  10. nomandates

    I have always loved the message about “misfits” in Rudolph the Red-Nosed Reindeer. As a child, that message resonated each year.

    As an adult, the dynamic that you’re describing makes me angry. How dare “social” people like your boss try to force others to conform and present in ways that make people like her most comfortable? I love the fact that she’s now going to be forced to back off and to accommodate your needs.

    I am going to show this to a friend of mine who needs to read it. Thank you.

  11. jlms qkw

    when she wakes up!  yay!  

    iriti, sometimes i wonder if maybe half of us used to be left handed and/or aspy.  

    it’s just a label.  

    and, um, i have a rather extensive collection of links and books if you’re looking for anything in particular . . .

  12. Hollede

    in the field of computers and mathematics are autistic and or have asperger’s. Think Albert Einstein and a whole slew of genius’ who have moved us into new realms of thinking and creation. Oh and life would be so boring if all we had were ‘touchy feely’ types running the world. I like an Earth that has a wide variety of types of people.

    I have seen this issue from both sides in recent years. I worked as a child protection investigator for too long and had a nervous meltdown about six years ago. I suffer from profound PTSD and debilitating anxiety which has caused me to withdraw from a big scary world.

    As a professional social worker, I watched and tried to help clients with mental illness, but my skills and the (lack of) skills from other ‘professionals harmed far more than helped. Now living on the other side of the equation has been something of a nightmare. I hear a lot of “get over it!” and “that’s just life, learn to deal with it”. These are not helpful suggestions.

    Too many ‘mental health professionals’ should find different work. Often therapists and psychiatrist’s do not see any thing wrong with me. That is generally because I strap on a shield meant to protect me from the world out there and when I actually step into their offices’ I tend to feel safe again.They are not aware how much effort and pain it took to get to my appointment. Add to that, an unwillingness to appear weak in front of others and I am labeled normal and get little or no help.

    It is a frustrating catch 22 and I have not been able to break out of the assumptions of others. I am grateful for the few who see me my struggles but they are rare and and don’t usually last long in the profession.

    Oh and btw I always thought the other reindeer were shallow and snotty for being mean to Rudolf until Santa picked him out as being special:~J

  13. My official diagnosis (obtained nearly 50 years ago) is minimal brain dysfunction. Of course, that label doesn’t exist any more. What I am is nonverbal learning disabled, which isn’t official, both in that it wasn’t affixed to me by a professional (only by me) and in that it isn’t in the DSM.

  14. wordsinthewind

    thank you so much for sharing. Seeing your advocacy inspired me to look at some problems in my life with a different view, one that most likely will yield more productive results. You are a wonderful writer, so glad you are posting here.

  15. dear occupant

    thank you for writing it. this and plf15’s earlier diary have allowed me to continue and finish mine.

    i share some of the traits you do and have been an outside looking in misfit my entire life. i only recently found out through some difficult trial and error, mainly misdiagnosis resulting in medications that only worsened my condition that i have social anxiety.

    i’m lucky enough that i work at a company that accepts me as is and have structured my life, pared it down to reduce the triggers that i don’t need meds, at all. i’ll keep plugging away at this diary, thank you for this.

    someone upthread used the word ‘Sassy’, i like that about you and i really hope this ‘label’ as uncomfortable as it might be, helps your boss back off the touchy feely program.

    that would have spiked my anxiety skyward.

  16. justme

    But in a very different way.

    I really, really enjoy my job—okay, maybe enjoy isn’t the right word, but I really believe in what I’m doing, all of which involves working with at-risk college students and some of which involves teaching.

    I am surrounded, however, by people who don’t necessarily believe in what they’re doing, who (for various reasons) have substituted the workplace for their families, who can and will easily spend most of the day sitting in other people’s offices talking, etc. All of which makes me, in our office suite, The Misfit.

    It’s been very frustrating for a long time, but I’ve finally come to accept it, especially as doing what I’m doing is landing me more and increasingly interesting teaching opportunities, and I really do love teaching and I especially love planning my courses and spit-polishing them and trying to figure out what I’ve done wrong or done right and and and …

    I don’t have problems reading faces or emotions, and in fact, I’m a bit of the extreme opposite in that I tend to be too sensitive to others. I’m not Aspergers—but I still stick out like a sore thumb at my job because I am apparently the only one in my area who really loves what they’re doing.

    I don’t know exactly what my point is except that I hope you understand you’re not the only misfit—and it might not just be Aspergers which is making you feel like a misfit. In particular, you might be an environment where people are substituting work for family or just there to collect a paycheck or whatever, while you really like working.

  17. has said what I might about you and about being “misfit” (which I typoed as “meing” misfit – projecting, much? ;~). So other than echoing, dittoing, high-fiving both your writing and your courage, I’d like to talk about the room.

    The ‘intellectual prosthesis’ of the Internet.

    not be judged by the color of their skin but by the content of their character

    Or the way they fiddle with a ring, blush, stutter. Their accent, the way they dress. Cut their hair. Their age, their gender. Their snappiness of reparte.

    Anything, other than the content of their character.

    The “soft” benefits of this intellectual prosthesis may be more transformational than the hard. Our ability to see each other for who we are.

    We are creatures of the mind. Of character.

    All of the trappings of physicality are a fog which blinds us from each other. We spend most of our time trying to see through – who is that, really? How can I tell, what cues will lead me to actually knowing?

    There is something wonderful about our ability to be, here.

  18. Denver11

    Diagnostic labels can be incredibly helpful. They can foster understanding, direct treatment or guide rehabilitation. But none of those things is really the case with me. In my case, the diagnosis is strictly to allow me access to the protections of the Americans with Disabilities Act of 1990 as amended.

    I think if you leave it at accessing “protections” of the ADA, then you have done a disservice to yourself and those around you.  At a minimum, sharing the diagnosis with your boss (and perhaps others) can “foster understanding” – because after all, if these folks are really so “touchy-feely” then they ought to be able to understand how you are different and how they can better relate to you.  Second, it seems that you did learn some things about yourself and your disorder from the testing, and to the degree that with focus and work, some of the behaviors that you have that interfere with effective relationships and communication with others can be modified, then you and others have gained.

    So don’t sell the “labeling” process short …. you and others might have something to gain from it. Other than ADA protection.

  19. Regina in a sears kit house

    frightening, not to mention frustrating events.

    I had a wise endocrinologist at one time comment (I paraphrase): the Diagnostic Codes are narrowly defined and there is rarely a person who fits the very small box that code describes. Fudging is almost always required.

    Each person is a specific and particular combination of qualities, genetic misfires, exposures to infections, chemistry, electrical function and environment. In other words, we are each unique.

    The spectrum of the various qualities is wide indeed and each of us our own brand of soup.

    good to see you and thank you.

  20. Cheryl Kopec

    I have combat PTSD. Today, as I was getting ready to head out for the afternoon, I noticed that my car had sprung a major oil leak. For most people, this would have been a major annoyance, but for me, it was a full-on panic attack. Heart racing, unable to be really coherent, the whole nine yards. I had visions of me going up in flames on the freeway. I called my neighbor, breathless, and eventually called/tapped several other neighbors. I’m still freaked out by it.

    Normally, I’m kinda sorta normal, but when something sets me off like this, my amygdala doesn’t know how to shut off, so I have all these panic chemicals flooding my brain, and it’s really annoying. I had one major errand to run this afternoon — a new printer that would be compatible with Windows 8 — and I treated my impromptu chauffeur to a quick Mexican meal. Calculating the tip proved a huge challenge, but with the help of my friend, I was able to finally calculate the correct amount. Thank God he understands PTSD, maybe, a little….

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