Posted by: E (The Third Glance) | July 26, 2014

Undercover Autistic: on disclosing autism in the (academic) workplace

Autistic – the word that I first heard applied to me my freshman year of college – it was weighted full of disdain, and I feared it. I feared it, knowing but little of the disorder I’d never really encountered, but had heard some very awful things about.

Autistic – the word that I learned more and more about, as I devoured everything I could read on the subject, which was just so utterly fascinating to me.

Autistic – the word that I learned explained the why of how I interacted with the world. The word that explained nearly everything that made me different from the people I was surrounded by.

Autistic – the word that gave me freedom from my fear and belief that I was just a completely broken person who would never succeed.

Autistic – the word that gave me power over myself and my environment.

Autistic – the word that so utterly perfectly describes me.

So why is it, that I’m so scared to say it aloud?

—————–

One of the things that I’ve mentioned before, is that while I am diagnosed autistic, and being autistic impacts many parts of my life in ways that other people just don’t ever experience, I am not “out” as autistic in my workplaces, lab or classroom. This doesn’t mean that people don’t know there’s something very different about me. They do. But I’m terrified to give the word that explains it all. The stereotypes, the negative views, the preconceived notions, and the horrible assumptions associated with being autistic mean that I am terrified to be open about myself, for fear of all the misconceptions.

As an early-career academic scientist, I don’t want to give anyone any reason at all to discount me. I realize that I’m in a really lucky position, where I don’t have to say my label in order to function (well sort of) in society. The stereotypes and negative regard that come with the word “autistic” are just too scary to contemplate, and I’m lucky that I can, for the most part, get away with not saying it. I can’t risk throwing away my entire career, and I’m privileged enough to be (right now, anyway), in a position where my oddities, quirks, and very autistic self is welcome and accommodated. I’ve built a little niche where I can thrive.

The thing is, the people around me know they’re accommodating me. They know I have difficulties, and that I sometimes have weird challenges they don’t even begin to understand. They know I have to ask for help at strange times, and that I interact with the world differently from them. I’m actually very open about these things, because it is so very obvious to the casual observer. I take control over my situation by being very open and explicit about my difficulties with sound, with talking, with textures and other sensory things. I discuss my difficulties understanding certain kinds of language and I speak openly about sensory processing problems. To deny them would be outright lying, so instead I speak up, I own my quirks, and I talk about them openly. There’s just one thing I don’t disclose. I don’t tell them I’m autistic.

I’m afraid that if I say the word, that I will be labeled forever. That I won’t ever get a job, much less a good one. That even if I do land a job, that I will be constantly doubted, that I won’t get tenure, or that I’ll be forced into positions I shouldn’t be in, all because there’s one little word that people have heard. Please don’t try to change my mind about this. I know there are many wonderful reasons to disclose your diagnosis, but the thing is that most of those reasons would be to the benefit of other people, but right now, it won’t help me. If I tell people I’m autistic, it might help change their views on what autism looks like, what autistic people are capable of. I’m not saying this is not a good thing, it’s just not something I’m comfortable doing.

Several people who know about autism have put 2+2 together. They know I’m autistic. They’re the safe ones – the ones who realize that being autistic isn’t what the stereotypes say. When they hear “I’m autistic”, they hear “I have trouble with a certain set of things, such as verbal and nonverbal communication, sensory processing, etc”. It’s the others I have to worry about, the ones who know about the Hollywood, Autism $peaks, tragedy version of autism. The ones who hear “I’m incapable of doing anything functional, ever” (even though I’ve accomplished a lot to be very proud of that they know about, by any metric). My world is full of the dangerous ones. And right now, I can’t safely open myself up to that kind of scrutiny from the dangerous ones – they hold the power, and I don’t want to be another casualty. Instead, I’m quietly changing the way people perceive me and how I interact with the world, without the word that carries so much force, both positive and negative in my world. And I wanted to share some of the explicit ways that I do so.

This post was prompted by a blog post by a fellow autistic PhD student* who is also in science, who has been struggling lately. This person has been trying to make some very big important decisions, and some of their autistic traits have been making it difficult to communicate with relevant people and work on making those decisions. Like me, they are not openly autistic, and, like me, don’t necessarily want to be, but are struggling with how to deal with their challenges and whether to disclose. I’ve found some wonderful work-around to get the help and understanding I need, and I wanted to share some of them. What follows is an expanded and edited version of the comment I left on their blog.

————–

While I’m often not immediately labeled as “oh, she’s autistic” by casual viewers, most people can tell there’s something very different about how I interact with the world than what they are used to. When those things become a barrier or a problem, I just want to wail “I’m autistic, that’s why!” But the thing is, that isn’t helpful. Most people don’t know what “I’m autistic” means in practical terms. They might know a stereotype, but how that applies to the situation at hand, is almost always useless. What I’ve found is that I can disclose specific things I have difficulty with, without giving it a name. For me, personally, and in my own processing of myself, the word “autism” sums it all up. But when I need to ask for help, when I’m struggling, even if it’s obvious (to me) that it’s struggling because I’m autistic, I give a specific example instead.

I say something like “I have trouble verbally communicating (talking) when I’m nervous. Would it be possible to have a brief email conversation first?” – sometimes they agree, sometimes they don’t. But it is a pretty reasonable request, and gives me some time to show that I can communicate effectively and intelligently before an in person meeting.

Or if it’s something to do with dress code, I’ll say “I have very sensitive skin and need to wear a particular type of clothing or I get very antsy and have a lot of trouble focusing because it feels awful on my skin. Can we work around that?”

When I’m stimmy or agitated or just fiddling with things or rocking, I just do it. If it is commented on, I just say “I like to play with xx, it helps me keep my focus”. Plenty of people have fidget toys. When I get excited and squeal and flap, and people tease me, I say “well I’m just excited”.

If I’m having trouble communicating in a group setting, because it’s busy and full of lots of people and everyone’s talking at once, I’ll say “Sorry, sometimes it’s hard for me to filter out background noise from the voices – your brains do that automatically, but mine doesn’t, and sometimes when I’m tired or overwhelmed, it becomes hard for me to talk or listen. Could we chat in a corner?” (Usually, in those settings that I can’t avoid, I place myself in a corner near the door – corner so my back is protected and I can visually see the whole room, and near a door so I can escape if need be)

Sometimes in the above situation (for example when I’m teaching lab and have 5 students talking at me at once), I just say “Just a second, I can only listen to one at a time, (s)he was first, I’ll get to you guys in a minute”. One of my former students told me recently that all of the class was kind of shocked by that, but they were like “oh, ok, with E, you just wait your turn, and she’ll get to you” – plus, I like to think I was teaching them common courtesy to not talk to a person who is actively engaged in conversation with someone else.

When people comment on my clothing (I’m nearly always wearing jeans and a fleece and socks, even in extremely hot climates), I say either “I get cold easily” or “I have sensitive skin”, or if I’m really feeling up for it, I’ll say something like “I have issues with sensory processing, and I wear particular clothes (long pants/shirt) because air moving on my skin makes me feel sick”. All of these are true.

When I get freaked out by an awful noise, I wait until I’ve calmed down, then if anyone asks, I just say “sometimes loud/ high-pitched/ sudden noises startle me, and it takes me a bit to relax after.”

When someone asks if they can call me, I propose email or text or skype (at least I can see them, and for some reason that makes it a bit better). I can’t get out of all phone calls, but it really helps – and as an added bonus, there’s a written record of the conversation, which is really useful.

When I just don’t understand something, or I’m having trouble processing or communicating, and I need to ask for help, I say so. The words “I’m sorry, I don’t understand what you’re saying, would you mind slowing down or repeating it?” are hard the first few times, but they get easier. The words “Please let me think about that for a moment” are also perfectly acceptable.

When I’m about to have a complete shutdown or meltdown, I have a safe place to hide (my office) and a person (my roommate, works in a building near mine) I can alert to the situation if it gets bad and I need actual support. But usually I just run off.

And (on the rare occasion) when people ask about one of my quirks, I explain.

All of these are viewed as perfectly valid reasons to ask for help or accommodations, or to explain differences. You don’t have to say “I’m autistic” – often it isn’t very productive, since most people who aren’t acquainted with your specific set of issues won’t understand what you need them to do, and, as I discussed above, it can actually harm you in the long run. Instead, just disclose the little difficulty that happens and let them build up over time. Those who know something reasonable about autism will guess, and some may ask you explicitly. Those who don’t, will just think you’re somewhat quirky. But they’ll still be able to interact better with you, assuming they want to. This keeps the “ohhhhhhhhhh she’s autistic and therefore shouldn’t even be able to do grad school” thoughts far away, and replaces it with “well, that’s a little strange, but ok, she knows how to deal with it for herself, so lets move on” – something so much more productive.

I’ve found, generally, that everyone has trouble with different things. Some of us have more trouble with things that others find trivial, and that leads to pathologizing and diagnoses. But everyone has things they aren’t good at. Acknowledging that you have a particular weakness (or several, though I rarely do the barrage all at once – it usually isn’t necessary), is totally fine, and can even help elevate you in the eyes of potential supervisors. Acknowledging it and having a work-around or some other alternative solution, is even better.

Of course, there’ll always be people who respond to things like this negatively, but I’ve found that the vast majority of people respond pretty positively when I disclose a difficulty. Sometimes I don’t have an immediate solution for it, but often I am able to come up with something (especially with a little thought). And it seems to have done me pretty well. Who knows, maybe one day I’ll feel safe using the Autistic label in my workplace. But even so, I’ll still have to explain what my specific needs are in context. For now, I just explain my immediate needs, in small, “safe-to-disclose” chunks, without the label of Autism or Autistic attached.

I know I’m autistic. And I know what that means for me and how to communicate it to people when I need to. And right now, that’s enough.

————-

*If you would like me to link to your post, you know who you are, please let me know and I will edit accordingly. :) EDIT: Post was edited to include a link to Sleep Wake Hope Then’s post “telling autistic

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Responses

  1. Hi. Thank you for this.
    (And you can link to me if you would like.)

  2. I understand this so well, there are many situations in which using the word autistic feels unsafe for me too. Most of the time I explain the individual need instead, as hard as that can be sometimes. This was a really excellent discussion, thank you.

    • I wanted to add that the mere process of explaining can be overwhelming too, regardless of how we do it. It’s particularly overloading and confronting for me to talk about myself with others. I don’t want to draw attention, and explaining that I need accommodations and why does exactly that. It’s often a difficult choice between speaking up and suffering through the situation, each option resulting in overload.

      • Absolutely agreed – the process of actually using the scripts I’ve developed to explain can be overwhelming, especially if I’m already overwhelmed. If I am at a point where I can’t use the script, I just let myself disappear and explain later. Most of the time, that is fine… Or sometimes if I know its going to be bad beforehand, I warn someone I know in the crowd that I might not be able to tolerate the situation, and that if I look like I’m getting panicked, to tap me, so I can get out before it turns into a complete shut down.

  3. Thank you so much for sharing with me your life with autism. I have a friend who has three autistic children and I want to learn as much as I can so I can interact with them.

  4. I came here via Bec. This is very helpful for me, the (mostly) NT parent of an autistic child. It’s a great way to reframe things which I might otherwise feel compelled to explain as part of my son’s autism. I really like the notion of addressing the specific need as it arises. Thanks!

  5. Sorry most of the people you work with are the dangerous sort. :P

    I use a lot of these same strategies. Even though I’m very out in general, including at work, even though the vast majority of responses from people I work with have been accepting and wonderful…most people just really still don’t know what autism means in concrete enough terms for the information to be of any help to me in any given situation.

    So it’s “I cannot do conference calls because I have a hearing issue.”

  6. Ah yes, I can relate to this. http://endautismstigma.wordpress.com/2014/04/14/shame-and-the-unwanted-identity/
    FYI it’s not what you might think

  7. This is so true… You have said it very well and I have to agree. I wish I could be more open about it (if somebody asked me directly, I certainly wouldn’t deny it) but until there is better general knowledge I fear that would only make things much worse for me. I have only told a few people close to me in “real life.” The reaction was not necessarily good, and coming from people who know me better I can only imagine how much more difficulty would result from people who don’t know me as well and also don’t care about me. I make similar explanations to those you’ve mentioned when things come up. Someday I hope things will be different. I would like to think that being open about it could contribute to a better understanding of autism in general but I that hasn’t been my experience so far. So I leave it to a select few who maybe care enough to get past the preconceived ideas.

  8. Thank you so much for your post. I live your approach. As a parent I’m nervous to label my child because I don’t want him to be underestimated. I just figure if strangers can’t figure it out then so what. I’ve always wanted to ask someone on the spectrum if they rather say “I’m autistic” or “I’m living with autism?” My child can’t answer that for me yet, but I can’t wait for that interesting conversation.

    • There’s a TON of really well-written posts on this (one in particular, but by no means the only one) – http://www.autistichoya.com/2011/08/significance-of-semantics-person-first.html

      The vast majority of us prefer “Autistic” rather than “with autism”. You can’t separate the autism from us – without it, we’re totally different people. We are autistic, in the same way that someone is blonde, or French, or tall. “Identity-first” language is how we refer to it, if you want to do more googling – there are a lot of great articles out there written by wonderful autistic adults discussing this.

      Thanks for asking about it! :)

    • Maggie: Overwhelmingly, most adult autistics call ourselves autistic. It’s not something that can be cured or removed, so saying I’m a “person with autism” is like saying I’m a “person with maleness.” It’s also a way of marginalizing how central autism is for almost every autistic I’ve ever met.

  9. I have a similar approach, although I do actually use the word autistic… but always embedded in very concrete situations and examples of what I need and what I can do myself.

    For example, I had a job interview a couple of weeks ago for a management position. I openly stated that I was autistic and that I have trouble reading facial expressions and non-verbal clues. The person who was to be my superior asked me how I would be able to manage a team of people if I was unable to gauge their moods. So I explained that because I am aware of my own weak points, I’ve developed work-arounds such as always asking for clarification, communicating directly and openly, and to ask for regular feedback. The fact that I addressed my own issues made a far more positive impression than hiding it would have done, and he actually said so. I got the job. :)

    So I completely agree with you. It’s my choice to label myself openly, but it’s not absolutely necessary if you take this approach of addressing individual needs. And let’s not forget the strengths!

    • “because I am aware of my own weak points, I’ve developed work-arounds such as always asking for clarification, communicating directly and openly, and to ask for regular feedback.”

      Yes, exactly. I’m very honest about my weaknesses and the workarounds. I just don’t use the word “Autistic”…

  10. Great post on a difficult topic. Thank you.

  11. I’m very much with you in your strategies, and I think it is way better what you do than mentioning “the A-word” (autism, aspergers, whatever you prefer) – at least I think itis best to explain all the specifics first over a long period of time, and when fairly certain the”dangerous” people have been educated enough to not be so dangerous, then perhaps some day in the future it may be safe and beneficial to put the autism label on top of it all.

    Everybody who knows me privately, knows about my issues with background noise etc (no way I can hide that, because there are too many things usually expected from people that I can’t do), so the sensory part is well explained. They also know that I’m socially different and no good at small talk, and I also explain other issues /particularities as they become up / are relevant in the situation, very much like you do. This enables me to, if I want or need to later, put the label on and NOT have the associated stereotypes pulled down over me with it, because at that point of time people will be “educated” enough about what it means in my specific case.

    (That is of course because I can get by. I am not saying this is the right strategy for everybody.)

    That said, I have not told my employer anything at all because my issues do not affect my job in ways my boss would know about, and I am good at the job despite the issues and get positive feedback, so there is no reasonto bring up problems (background info: I am working independently from my car not in a workplace, and communicates with my boss mostly via emails).

    Unfortunately I will probably have to quit because I need a bigger, more predictable income (it is part time & under casual conditions/hourly rate) and due to other circumstances this is becoming more critical now. In that regard, I’m thinking to meet with my boss and explain my situation including the challenges I’m facing with most jobs, in the hope she knows of opportunities I’m not aware of (she is a great, very trustworthy boss and the organisation is the best employer I have ever had. and she is very happy about my work & attitude).. and for that to be relevant, she’ll need to know about my specific workrelated limitations. I will explain the particularly issues I have but I am not planning to mention autism/aspergers, although I won’t completely rule it out if for some reasons it seems very beneficial to do so in the situation.

    However, my situation is different from yours because I don’t have a career and isn’t in the “early stage” of my worklife. I am in the late stage of my worklife after an incredible long cavalcade of mostly short random low level survival jobs (so there isn’t really that much at stake, never was). I very much admire your strategy of turning your passion into a career and wish I had been that self-wise, confident and directional when I was in your age!

  12. I understand entirely your dilemna, and empathise with your position (gosh someone with asd can empathise!). Maybe you can make more impact by working to the top of your field and then one day coming out as being asd! This would be a much safer route for you in this position I think, while still giving a role model for future generations.

    For me I have openly declared my Autism for all to hear. But my situation is different to yours, I’m an artist and the art world is more accommodating and accepting of autism. Also as the father of three autistic kids, I don’t want them to grow up feeling like they should be ashamed of who they are. I’m hoping that any difficulties I do experience from being open ( I still encounter people who discount me because of it) will eventually be worth it if it helps towards making a better world for my kids.

    Lets hope that a time comes when being Autistic is something to be proudly declared not hidden behind fears of discrimination!

  13. This is really great. May I include a link to this on the employment tab of a website I’m creating? It’s for parents/anyone who want to know more about autism and is a doorway to AUTISTIC voices/bloggers and neurodiversity friendly parents / professionals. The website is under construction but the facebook page (Autistikids) is up and running – full of links to the same type of posts. I can be reached at autistikids@gmail.com if you have any questions. Thank you!

  14. 1st and foremost, I am so glad that you wrote your text (at least in part) with A…. in mind. I do hope that some of the scripts you describe or variations thereof can help. You see, to their post of June 16 I wrote (a 12000 character, ‘omg’ in hindsight; this one is not short, either) comment from the ‘academic’ side of their search for the ‘right’ lab but I am quite sure that your approach is more constructive. I keep my fingers crossed for them.

    2nd, confirming your post with a part of my biography. Several years ago, I was (mis)diagnosed and treated for ‘therapy-resistant depression and comorbidities’, including stationary treatment. My ASD was not recognized even in such a setting. I got my pills and some supervision. Point.

    Eventually I returned to my workplace, shaky and drugged. Most people were not aware of the reasons for my hospitalization. Over the months I ‘outed’ myself, developing scripts like. ‘Sorry, talked too long / exalted on that, it is the anti-anxiety meds’ or ‘Is it OK if you do the first draft of our project and I work from there? You know, my long term memory is affected by taking XY.’ or ‘I must take a break of an hour now. To stay concentrated so long is tiresome since I am on (med) YZ.’

    Sounds familiar? Unknowingly by then I described my Asperger’s! Which finally I let out. Btw, still medicated but at tolerable-functional dosage. I had passed as NT for twenty years of a career in biomedical research. At the prize mentioned above. OK, nobody knew better, diagnosis in the 1980ies and all.

    I cannot claim my peers were fully supportive and accommodating. But it was not bad either. Describing symptoms of depression is socially almost acceptable nowadays. Overall, six years later I (re)gained quite some respect not only for the publications (impact factor) but because it was finally acknowledged that it always had taken me more effort than others. And it is completely OK now with everybody that I do *not* participate in parties and the likes of it but donate a ball for the soccer team or cookies for the days before Xmas. But there will be no *second* clarifying outing for Aspieness :)

    Postscript: An earlier outing scripting like you would *not* have affected my career but would have made life easier. I can elaborate on that if you want but it will be of less interest to the other readers.

  15. I’m not autistic — but did grow up as a faculty kid, the daughter of two highly-regarded research scientists. In my experience, academia is a friendly and welcoming and remarkably “forgiving” place for folks on the spectrum.

    My parents aren’t on the spectrum but at least a third of their same-ish age faculty colleagues probably would be had they been born 20-50 years later. For grad students, post docs and junior faculty today? Probably 50% in both materials science and physics.

    Heck, as a grad student (at a different school), my advisor’s lab had to moved across campus at great expense in the wake of a, um, scientific disagreement with fellow professor “Dr. X” that came to be known as the Great Snowball Earth Argument of 1996. Because both men, tenured professors in their late ’40s were literally incapable of not practically coming to blows when the crossed paths in the hallway of a six-storey building in which most of geology department was based. Nobody batted an eyelash — this kind of thing happened every few years, so often that the chair/dean “got” that mediation wasn’t an option. Neither prof was *capable* of not engaging.

    The only other workplace that cheerfully considers this sort of behavior from otherwise smart, accomplished grownups who are generally expected to know (way) better is a teaching hospital. Like universities, they tend to be places where staff having all the proverbial eggs in the brains basket (with none/few left over for the social skills basket) is par for the course.

    The Peter Principle states that an individual will be promoted until they become incompetent — and a really bright [staffer] who delivers results will get really, really far even with zero people skills.

  16. Another wonderful article, E!!
    Thank you!

  17. THANK YOU FOR SHARING. IT HELPS SO MUCH TO KNOW HOW YOU FEEL, GIVESME AN INSIGHT TO HELP MY OWN KID WITH HIS STRUGGLES AT SCHOOL.

  18. I do use the word Autistic because I want to put a real face to autism, but I’m an in-your-face-advocate sort of person. But same as you, I am able to say, “these are my strengths, these are my weaknesses, here’s how we can work best together” and I think giving people the tools (and not necessarily the label) can help people understand. Whatever you are comfortable with!

  19. I like this approach. In a way you’re providing people with more useful information than the label would on its own. The label is only useful if the people you’re talking to have a good understanding of it. The specifics are more universally useful since they can be applied immediately, regardless of the listener’s level of understanding. It’s almost like the difference between writing an article for a magazine and writing a paper for a peer-reviewed journal. By virtue of their being peers, the audience of the journal will understand terms and labels in the paper that the audience of the magazine will not. But the audience of the magazine will be able to understand specific examples that they can relate to, regardless of their background.

    I’m cringing as I write this, but I’ve found that people are more tolerant of injury or age-related disabilities than they are of innate conditions. I had to smile at your example of the students in your lab all talking at once. I can’t process more than one stream of speech at a time, either. At one point I had a therapist who liked to play music during his sessions. I tried to explain that music with lyrics threw me off since I could only listen to the lyrics, or to him, but not both. I don’t think he ever got it. But when I tell people, “I have a hard time hearing. Can you turn off the music so I can understand you?” they have no issues with it. I’ve used the same explanation when telling people why I have to stare at their mouths when they talk. “I’m losing my hearing, so I have to lip read.” No problem. But the times I’ve tried to describe auditory processing disorders it has universally fallen on deaf ears (pun intended.) Sometimes simpler is better.

    I have disclosed to people at work that I have Tourette’s Syndrome. The symptoms can be more obvious than those of autism, and the alternative explanations – head injury, drug reaction, “crazy”, etc. – can be more damaging from a professional standpoint. I think it was the right choice for me. But I understand your reasons for not disclosing your autism in your workplace.

    I enjoyed reading the comments regarding the difference between “with autism” and “autistic”. I’ve debated that same question as it applies to Tourette’s Syndrome. “Tourettic” does get used from time to time, but usually to describe a behavior rather than a person. And yet TS is as central to me as autism is with my son. I think it’s just a fluke in how things were named. My son is autistic. Me? I’m ticcy. It just doesn’t have the same ring to it.

    • Hi Tom, thanks so much for your comment, I really enjoy hearing your perspective on things. And yes, I’ve found people to be much more accepting of temporary (injury/illness) disabilities as well. Sad, but true. I like “I’m ticcy” – it has a neat ring to it.

  20. I never thought about this before. It’s very interesting. I don’t tell people I have autism simply because I don’t really see a reason to. I have told a couple people and it just happened that they had children with autism, but I wonder if people would see me differently if they knew I have autism.

  21. Thank you very much. It is quite similar with having Klinefelter’s syndrome though people usually know even less than about autism. Autism often has these clichés like either savant abilities like rain man or unable to communicate or empathize, while people here in Austria don’t know anything about Klinefelter and if they google it, they will mainly find out it’s a physical condition. In fact, many traits listed for Klinefelter are autistic traits. However, if I say that to colleagues, things you described would happen: Especially those who only see the negative side of that condition and probably need another reason to throw me out would be confirmed. Despite knowing about the success I had, the prejudices would dominate and moreover, not knowing how to treat me now. Some people would even think I misuse it as an accuse (instead of a reason) warranting all my (bad) behaviour.

    Sometimes, it is not so easy just to tell them why you act in this manner. People tend to say “change your attitude, don’t be so upset when plans suddenly change!” or “don’t critisize everything!” or “I told you so, why didn’t you do it?” That’s not so easy like it sounds when your brain is wired differently and you can’t suppress being upset or being too honest or did the same mistakes again because your short-term memory is fucked up. If you have already the label of bad attitude (like doing it on purpose), it is quite difficult to get out this without a deeper explanation.


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