Wednesday, January 8, 2014

The pressure to present as "normal"

These past couple days I have been preparing for an upcoming graduate school interview. I have found a list of commonly asked grad school interview questions and I have been working through them, pondering answers and writing some of the answers down to help me retain them. Honestly, I rehearse much of my speech. When I know I'm going to be in a situation where I must converse, I come up with topics to discuss ahead of time and them come up with scripts for the topics. Most of my friends are introverts, so they have no problem with me leading the conversation like this. It makes things more comfortable for both of us, I think.

But interviews are scary. Scary because I don't know exactly what questions will be asked. I have this list, but they could pop a question that I never read or considered before. And this is scary, because spontaneously producing a verbal answer to a question I never thought of can cause a  lot of incoherent attempts to answer. And this is not a good thing, because of course one of the main points of this interview is to convince the faculty that they do want me in their program.

To be quite frank, I feel like this whole interview will basically be a test to see how non-autistic I can present. Because let's face it, when it comes to important interviews, none of my autistic traits are assets, and most are disadvantageous liabilities.

My dislike of eye contact? Liability. My desire to stim when in stressful situations? Liability. (Apparently you're supposed to sit still for things like this.) My struggle to produce thoughtful, coherent, spontaneous speech when under pressure? Liability. The fact that it takes a lot of mental effort to remember to use positive body language? Liability. My hypersensitivity to stimuli that affects my auditory processing skills? Liability.

I disclosed the fact that I'm Autistic on my personal statement, so most, if not all, of the faculty that I'll interview with should already know that I'm Autistic. Despite knowing this, I don't think they'll cut me any slack. In fact, I have a sinking feeling that I'll be under closer watch to see how well I can present myself. It seems sad that professors in the field rehabilitation counseling would be ableist in their application process, but these people dwell in a neurotypical-majority society where social norms govern everything. Ableism is so prevalent and pervasive that they probably aren't aware of the fact that they might naturally be inclined to discriminate against an Autistic person who couldn't adequately satisfy all of these norms.

The pressure on Autistic people of all ages to present as "normal" as much as possible is absolutely overwhelming. This pressure is especially evident during all interview processes. I'm willing to bet that one reason unemployment among Autistic adults is so high is because many of us just can't successfully get through the NT-driven interview process. The unconscious bias against us is insurmountable.

I acknowledge that many times I have NT-passing privilege and I've gotten through interviews in the past without the employer/interviewer knowing that I was Autistic. But that's not really the point. The point is I shouldn't have to try. The point is I shouldn't have to mimic and masquerade. The point is that this pressure to present and pass as "normal" should not exist. Ableism should not exist. But it does. And it's exhausting to figure out how to deal it all the time.

Tuesday, December 31, 2013

Reflections on a year gone by

I can't believe it's New Year's Eve. It feels just like another day. Time is an odd concept to me. It always has been. The beginning of a new year doesn't really feel like it has much significance, because honestly, it just feels like another day. The emphasis people put on days like today and tomorrow doesn't really make sense to me, but I just go along with it because of course, like anyone else, I like the idea of new beginnings, and I also try to fit in with the crowd (sometimes).

I do think that taking some time for reflection can be a good thing. Taking some time to look back and see what the past 365 days have brought, what I've learned, where I've grown, where I can spot good and beauty. It's a helpful exercise at times. And I suppose that this is what has brought me to this post today. Because this year the most profound thing that happened to me was that I got my official ASD diagnosis. I think only other late diagnosed Autistics can really understand just how significant this is. Some people didn't understand why I wanted a diagnose in the first place. Why label? Why go through the expensive evaluation when you've gotten along just fine before now?

Except I haven't gotten along just fine. And it's not really a label.

I went through the evaluation process early in 2013. I actually think I emailed my prospective psychologist on New Year's Eve. I wasn't expecting to hear back from her right away because it was a holiday, but she responded quickly and after a brief phone chat, we set up an intake appointment. It took several visits and then I had to wait several more weeks to get my evaluation papers written up, but eventually everything came together and I had my diagnosis.

This wasn't a label to me. This was an identity marker. This was about finding myself and my community. This was like finding out that I belonged to an entirely different culture and I didn't know it until I had lived over two decades in a foreign one. I tried to get along okay in this foreign culture, but I kept saying things wrong and breaking social norms and not understanding and feeling overwhelmed and anxious and scared. But with this diagnosis, I found my place. It was confirmed.

The official diagnosis opened up so many doors for me. I was able to give a presentation to staff counselors at my university about ASD and how they could better serve Autistic students. Because I had the backing of a professional diagnosis, I finally felt confident coming out of the Autistic closet and I posted about my condition on Facebook. I got so many positive responses from many of my friends, and I felt such a sense of freedom that I didn't have to hide anymore.

I'm still in the process of trying to be authentic me, because I stuffed and hid and tried to be a chameleon for so long. But this year has brought so much growth and positive change for me. This year, more than any other year, has been a year of becoming. A year of Being. A year of understanding myself and a year of giving up on trying to fit in with everyone else.

During my best moments, I feel so confident. So serene. So full of assurance and self-esteem. Of course this doesn't stay all the time because I have mood swings like any other, but it's still there at my core. And honestly, this all stemmed from going through evaluation because that helped confirm things to me and helped me find myself.

Am I excited about 2014? I don't really know. I'm anxious about it, because there's so much uncertainty. But there are also things to look forward to, and people to be thankful for, and beautiful things everywhere I look. I'm ready to say farewell to the old year, thankful for all it taught me. I'm ready to embrace the new year and see what else is in store for me.

Sunday, November 24, 2013

Faith and Religion: Sitting in Uncertainty

Faith is weird.

There, I said it. It doesn't really make sense to me. Although I have strong emotions and on every Myers-Briggs test I take I score as a Feeler, I tend to think things through slowly and make decisions using my rational mind. And to my rational mind, faith and religion are weird. Believing in a God doesn't really make sense to me.

Oh yes, it makes sense that we need community, and good religious communities are powerful. It makes sense that people want to believe in something Bigger than ourselves. It makes sense that people want to believe that this world isn't all there is. To my rational mind and because of my sound understanding of psychology and sociology, these things make sense.

I understand the logical reasons for faith and religion. I know why these things exist, and I see that for some people, they're really good things. And they haven't been all bad for me either. I know that when people are part of a good religious community, their mental health is better (conversely, according to new studies, solely spiritual people who practice faith and belief alone have worse mental health).

But I feel like I'm having a religious crisis. I was raised in a conservative Evangelical Christian family. Church a couple times a week has always been a part of my life. Talk of Jesus and God permeated everything. I got baptized when I was a kid. I joined the church when I was a teen. I've identified as Christian for as long as I can remember. But I don't know if I can identify as one anymore.

Now that I'm a young adult, I find myself trying to sort through what I actually believe and what I tried to convince everyone that I believe. I'm trying to figure out what I believe and what I said I believed so that I'd fit in and be accepted. I just don't really feel it anymore. I don't know that I ever did. I see people being emotionally moved by religious songs and messages and sacraments, and I often feel nothing (and yet I find myself weeping when I hear Beethoven's 9th Symphony). These things don't grip me the way they do other people. Is this an Autistic thing? I know some of my other friends on the spectrum have told similar stories.

I want to believe. I do. I think faith is beautiful. Religion, when practiced in a way that serves to better yourself and others, is beautiful. Jesus and what he did and stood for inspire me. I love his teachings. I love large parts of the Bible. The Psalms are powerful. The Proverbs have the wisdom of the ages. I love the idea of being created in the image of the Most High. These are all awesome things to me, in theory. But in my gut...I'm not sure I feel it.

This is the first time I've allowed myself to acknowledge my discomfort, my questions, my uncertainties. Being raised in the Church put certain pressures on me. There were expectations. So I went along with the flow, trying all along the way to convince myself that this could work for me too. But I'm not sure anymore. I'm not sure.

I think this will be a long journey. A long journey of becoming and uncovering. But I realized that before I can even start to find some answers and certainty, I had to be honest with the fact that right now, I'm nothing but a bundle of questions and doubt.

Saturday, November 16, 2013

"This is Autism" Flashblog

Linking up here:

Suzanne Wright, co-founder of Autism Speaks, would like you to think that Autism is a tragedy. In her recent post on the Autism Speaks blog, she spoke about Autism as a crisis and compared us to children who are missing or gravely ill. She said that parents of Autistic children live in despair, that they're not really living. This is the picture of Autism that she is trying to paint. And it is wrong. This is NOT Autism. Autism doesn't mean that we're lost. It doesn't mean that we're gravely ill. It doesn't mean despair and hopelessness. It doesn't mean we're helpless individuals who can't communicate or do anything for ourselves. This is wrong.

Let me tell you what Autism is to me, an Autistic adult.

Autism keeps me young. Yes, I grow older in years, but I haven't lost the childlike joy that most of my NT friends no longer fully possess. I get excited about things in a way that allistic people can't understand. Sometimes it's hard to have more intense emotions, but when it comes to joy and happiness, and when it swirls inside me, full to the point of bursting, I wouldn't trade it for anything.

Autism keeps me focused. My intense obsessive interests have often been very beneficial. They usually revolve around issues of social psychology, and my ability to hyperfocus helped me excel in college. I love learning, and although I wouldn't go so far as to say that I'm smarter than my friends, I will say that my Autistic ability to hyperfocus has helped me develop a vast knowledge base.

Autism keeps me honest. The longer I live the more I realize that allistic people aren't typically very honest. They sugarcoat things and try to tell you what they think you want to hear. We need more honesty and authenticity in our society. No more hiding under half truths and white lies. My Autistic passion for truth and accuracy adds a freshness and clarity to the world that I think is invaluable.

Autism keeps me sensitive. I think it is the sensitive people, the ones who perceive and notice and feel the most, who are the real movers and shakers. I might process things slower and feel things more keenly, but this deliberate sensitivity keeps me in touch with the world. I notice things others miss. I intuit feelings people thought they had hidden. My Autistic senses help me connect with people and help me move for change.

Autism keeps me hopeful. I know that there are some Autistic people who are cynical. But the part of Autism that keeps me young also lets me see the best in people and helps me hope for the best in all circumstances. Some people call it naivety and say it's a bad thing, and that I need to grow up and get "street smart". But I call it hope and say it's beautiful.

This is Autism. This is childlike joy. This is focus and knowledge. This is honesty and authenticity. This is sensitivity and perception. This is hope and beauty.

Autism Speaks, you don't speak for us. There is no tragedy. There is no crisis. We know the goodness and beauty of Autism, and we will continue to proclaim it.

Friday, September 27, 2013

I want an embracing

Today I was asked what I wanted. I read a blog post written by a friend, and this is what she wrote: "I want to hear your wants," she said. "I want the inner ones. The ones that take bravery and a lack of self-consciousness to say." People don't ask things like that very often. I can't remember the last time someone asked me what I truly wanted.

There really are many things I could write about. I actually want a lot of things. My soul has some very deep, deep longings. But there's one main thing I want. And this one thing trumps all the other things, so I'm going to write about that. So listen to me. Because I'm about to tell you what I want.

I want an embracing. 

In the dictionary, the first listed meaning of the world embrace is, "[to] hold someone closely in one's arms, especially as a sign of affection." The second meaning is the one I'm talking about. "An act of accepting or supporting something [or someone] willingly and enthusiastically."

I want to be embraced. I want to live outwardly as my whole self. I want to live in a world where I can feel safe when I'm being myself. Where being authentic doesn't make me a target. Where there's no ableism to fear. No judgments, no ignorance, no meanness. A safe world, where it's okay if I am sensory defensive, or sensory seeking, or if I want to carry a stuffed animal around with me everywhere because it makes me feel happy and calm. In a world where it's okay if I stim how I want to, where people don't say, "Hey, don't do that hand clapping thing. You look autistic." Where it's okay if I don't look at people's eyes, and where people don't expect me to try and laugh at the jokes that don't make sense to me.

I don't feel embraced. There are people out there trying to teach me to associate "Autistic" with "shame". Who tell me I shouldn't disclose and I should "pass" as neurotypical for as long as possible. Well meaning people tell me that if I disclose and if I act like my true self (i.e., if I don't work hard at passing), then I won't get a job and I won't get into graduate school.

I want people to be understanding and wise. I want people to be open minded and not to think "antisocial, incapable, weird, slow, awkward, not empathetic" when they hear the word "Autistic".

Messages all around me scream HIDE YOUR AUTISTIC SELF and NO ONE WILL LIKE YOU IF YOU SAY YOU'RE AUTISTIC. Or what sometimes feels worse: NO ONE WILL BELIEVE YOU. I want a shame free world. I want to be told that my neurology is lovely, and that I am beautiful not in spite of my Autism, but because of it.

I want an embracing. And really, isn't this what everyone wants? To be accepted, even down to their innermost being? Do we even know what this looks like?

To me, when I picture it, I picture something like a welcome home party. Where there's a big group of people, and they're all grinning broadly. Why are they smiling? They're smiling because you are coming. You're coming to see them. They are celebrating you and your existence. There's cake and streamers and balloons. People are cheering, and all around you, you're surrounded by this feeling of I. Am. Wanted. 

I think that's what an embracing is. I think that's what it looks like and feels like when you, ALL of you, is deeply accepted. It's this knowledge that you are wanted. It's not that you're just being tolerated. It's that you're being celebrated. Embraced. Welcomed. Cherished.

That. That is what I want.

Saturday, September 21, 2013

Using Accessible Language

The social model of disability asserts that society is the primary contributing factor in disabling people because of the barriers society places (purposefully or inadvertently). Disability rights activists fight to remove these barriers. As such, disability rights activists talk a lot about accessibility. Activists fight for accessibility to buildings and venues for people who use wheelchairs. Blind disability activists fight for blogs and emails to be written in plain text so that the words are accessible to them and can be read aloud by their computer programs. Etc, etc.

Lately I've felt that one area of accessibility that isn't talked about enough is accessible language. By accessible language, I mean using language that is accessible (understandable, graspable) by everyone regardless of disability status. Of course we know that Autism is a disability that affects communication. Autistic people often communicate differently, and we often comprehend and use language in atypical or uncommon ways.

One area that this impacts is the area of sarcasm and irony. By and large, Autistic people are literal people. This doesn't mean that we think sarcasm is bad; we just typically don't get it. This also doesn't mean that we don't use it. I use sarcasm frequently. I think it can be really funny and can be a clever way to get a point across. But when I am being sarcastic, I always try to make it clear that I'm not being literal. However, for the most part, I don't understand other peoples' usage of sarcasm. When I know someone really really well, I'm okay at picking up their sarcasm (usually). But when the average person uses sarcasm, my automatic reflex is to take all their language literally, so I get confused. This confusion can lead to feeling upset, because it can be really upsetting to not know what's going on or to not understand what someone is meaning.

I tend to just let people know upfront that I don't get sarcasm. I don't ask them to refrain from using it around me; I just let them know that I'll probably ask for clarifications a lot. There are some people who communicate sarcastically almost exclusively. I usually just choose to not hang around or befriend those people, because it's too hard to decode what they're saying. Which is fine. People can be as sarcastic or ironic as they want, and I have the freedom to decide whether or not I want to be around sarcastic people.

However, if someone is giving a presentation, lecture, or talk that is advertised as being open to everyone, I feel very strongly that their language should be accessible to everyone. This means that they should choose to use language that can be understood and comprehended by people who have disabilities that affect language and communication. What does this mean? It means that they should err on the side of using literal, straightforward language, OR if they choose to use sarcasm, they should make it clear that they're being sarcastic, and they should explain their sarcasm as necessary.

I'm writing this post because recently I got together with a friend who told me about a mental health talk he gave on a college campus. This talk was advertised as being open to all students, staff, and faculty. Everyone was welcome to come and listen. It sounds like it was a good talk. It addressed various mental health issues that I think are important. I'm glad this friend gave this talk. Mental health awareness is a good thing. But what isn't a good thing is that he used heavy doses of sarcasm in his talk and power point slides. What's an even worse thing is that he assumed that people were going to understand that he was being sarcastic. He even said as much to me. He said, "When people saw this one particular slide, of course they knew I was being sarcastic. How could they not? It was obvious." This upset me, because had I been at his talk, I can almost guarantee you that I would NOT have assumed he was being sarcastic. I would have been confused, which likely would have lead to me feeling upset and lost. When I pointed this out to him in a subtle, "dude, your ableism is showing" kind of way, he brushed me off and didn't seem to care. 

This was distressing to me, because he's usually such a good ally. He's not usually ableist, and I usually don't have to call him on his allistic (neurotypical) privilege. But this sarcasm thing was one thing he just wasn't willing to let go. Frustrating. Really frustrating. I couldn't understand why he couldn't see that he was contributing to the social model of disability by not making his language accessible. It just didn't seem like a hard thing to change, and I'm pretty sure that when you make your language accessible to all, you make it much more powerful. Shouldn't he have wanted that?

Wednesday, August 14, 2013

Executive Function Fail (with pictures)

I'd have to say that one of the tougher parts of being Autistic is having so much executive dysfunction. But before we talk about dysfunction, let's talk about what executive functioning is. The first sentence of the Wikipedia article on executive functions says, "Executive functions is an umbrella term for cognitive processes that regulate, control, and manage other cognitive processes, such as planning, working memory, attention, problem solving, verbal reasoning, inhibition, mental flexibility, task switching, and initiation and monitoring of actions."

So basically, every time you complete any sort of task, you're relying on your executive functioning skills. This could be anything from cooking to getting dressed, from doing a math problem to following a map. Any task that has steps (i.e., do this, then do this) requires executive function skills. It's no secret that Autistic people tend to have executive dysfunction. This dysfunction affects various things in varying degrees, and of course, like everything, it varies from person to person.

My executive dysfunction really shows up when it comes to cleaning, cooking, and organizing. These are the two main things that make independent living quite difficult for me. Cooking, cleaning, and organizing require too many steps, too much planning, too much working memory, too much mental flexibility, and requires me to initiate and monitor too many actions...and forces me to try and make too many decisions. It's like there's a short in my brain. Whenever I have to attempt to do a cooking or cleaning task, it's like my brain just freezes up and fizzes out. It's not that I'm lazy. I'm not. It's not that I'm not smart. I am. It's just that for whatever reason, Autism really affects this part of my neurology.

Case in point: I recently moved out of an apartment that I shared with a roommate back into my parent's house. I did this for a variety of reasons...mainly to save money. The problem is this: At my apartment, I had my own bedroom that had a lot of stuff in it. But I still had a bedroom at my parents house that had a lot of stuff in it. So when I moved out of the apartment, I had to somehow figure out how to squeeze two bedroom's worth of stuff into one bedroom. It's not working. I put the big items in a storage unit (furniture, etc), but a lot of stuff I just need to sort through, organize, and pack into boxes or containers before I can store it.

It's not going well.

Basically, I just don't know where to put things. I have a couple boxes filled with random items sitting on top of each other. I need to sort through them, take out what I'll want to use, find somewhere to put those items, and then pack the rest away. Random clothes that I don't know where to put get stacked up against the wall. Small items get tossed onto the dresser.

I have long rectangular container filled with old school items and book. Papers, notebooks, books I read for English classes, music name it, it's in there. And I have no idea what to do with it. So there it sits. Also pictured is a roll-along-backpack that I have yet to unpack from my beach trip. And of course some random shoes and a hoodie. (Note: putting things ways (and unpacking) requires SO MUCH executive functioning too.)

All the papers that aren't in that aforementioned container have been tossed onto my desk. Some should just be thrown away, but some I want to keep. But I don't know where to put them. And I don't know how to initiate the sorting process.

Lastly, the book pile. I've rest all of these books. Most of them I don't have a desire to reread, but of course I want to keep them, because I enjoyed them, and I like having a substantial book library. But again, where do they go? The small bookshelf I already have in my room is chock full and overflowing. I don't have room for another piece of furniture. I need to get them more organized...maybe bring in another container to put them them in the attic for now? I don't know. Again, don't know how to initiate this process or where to start.

Basically, I need to do some serious organizing. I need boxes and containers. But what's almost as difficult as the organizing process is the decision making process. What do I keep and what do I store? What if I end up storing something that I end up needing to use? How do I predict whether or not I'll want to access or use something? All this decision making stuff involves executive function too. AND IT'S NOT WORKING. So here I sit, day in and day out, in this messy chaos. Not because I'm lazy. Not because I'm procrastinating. But because I'm Autistic, and my executive functioning skills are poop.

Oh, I just found out that there are these people called professional organizers. Hmm. It might be worthwhile to look into this...