Reading Is Hard

 

adult-beverage-blanket-1550648I’ve had this problem for years, but never really thought about it until now.

The problem is I have trouble reading.  It’s not that I can’t read, I can do that rather well.  But when it comes to reading books or articles, it can become a chore.  The words start to lose any sense of meaning and I tend to not comprehend the reading.  The other thing that can happen is that I lose focus on reading.  Even if the book has my attention, I get antsy and can focus.  So I end up reading for no more than a half hour. This happens on a spectrum; some books are easier to read than others.  More modern books tend to be a little bit easier to consume, but the older the book and the more “thick” the book is, the harder it is to read. For example, when I was in seminary, you have to read a  bunch of theologians. I was excited to be reading these books, but most of them were hard reads.  Theologians like Barth and Tillich were a bit easier to read, but others like Friedrich Schleiermacher, were just impossible to read and comprehend.

I’ve been wondering if there is a link between being on the autism spectrum, which I am, and reading.  I’ve tried to find anything online about reading and autism, but there is very little information.  I did find this abstract from the National Institutes on Health that is somewhat helpful.  I’ve wondered if I’m dyslexic, but I’m not sure.  What I do know is that it can be frustrating to hear someone say they read something from the Federalist Papers and I want to read it, but I know that it will be nigh unto impossible for me to read.

What I would love is to find ways that would help me to read and comprehend.  As hard as it is, I love to read. If anyone has any advice, I’d love to hear them.

 

It’s Neurotypical World and I’m Living In It

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One of the thing that I’ve noticed over the years since my autism diagnosis is how others on the spectrum demand the world accommodate to them.  That makes sense; like other persons with disabilities, there is a time when you do have to demand that changes be made to be able to work or simply live.  But there are times that I wonder if what has to be done, when possible, is to…well, suck it up and try to adapt.

Let me explain. Something that I am learning over the years is that people won’t always bend to your wishes.  There are a lot of reasons why some valid and some not.  More often than not it bad intent, it just is. I’ve experienced this in a lot of situations.  In those times, I’ve learned to stretch myself and try to adapt as much as possible.  It isn’t easy and it’s not always successful, but what I am learning in life is that life really isn’t fair and that sometimes you just have to find the best way to get something done. Sometimes saying that your autism means that you are so focused on something that you forgot the other thing you needed to do won’t cut.  Sometimes all you can do is apologize and say you will do better.

I’ve been trained as a journalist.  Being a journalist means you have to interview people.  Interviewing is not easy for me for the simple reason, meeting people and doing small talk is difficult.  The other part is that I have to try to create a story from my notes.  There is a part of being autistic that focuses on perfection.  I wanted to make sure my stories had the right information and I was trying to make sure that the quote I used was exact. Let’s not even start talking about using the phone.  The whole thing was draining and it made me not want to write stories even though I loved writing and I loved writing stories.

Without going into much detail, I was pushed to have to interview people and write again.  It’s my job and for a long time, I was trying to avoid it.  But when I had to do it, I had to find ways to adapt.  Using dictation software on my iPhone helps with the fear of having to be perfect.  I’ve had to learn to make small talk with people and I also wrote stories ahead of time so that I wasn’t so nervous.

I’ve had to adapt.  I didn’t have a choice.

I don’t want my experience is something everyone with autism/Aspergers should do what I’ve done. Not everyone has autism like I do.  But if you can adapt, I think you should try it.  Just because you’re autistic, doesn’t mean you can’t challenge yourself.

I’m glad I was pushed into something I had to do.  Reporting and writing didn’t have to be a chore.  I learned to use tools that would make it easier for me to do the work. If I never allowed myself to try to adapt, I might feel better, but I think I would be a lesser person.

When I titled this “It’s a neurotypical world and I just live in it,” I was trying to get the point across that sometimes I can’t expect the world to make room for me; I have to adapt.  Sometimes you have to.  But I think I’ve learned I can live in this strange world at least on some days.

Autism Alone

 

peerrejectionofautisticchildren1For a long time, I always felt like I was treated differently.  People never got close to me. People were friendly, but I was always kept at an arm’s length.  I used to wonder what was going on with me.  Was it because I’m black? Over the last ten years or so, I’ve learned that race was not the reason people weren’t getting so close to me.  It was because I’m autistic.

One of the things you learn about being autistic is how socially isolating it can be.  You don’t feel close to anyone.  People don’t always go out of your way to get to know you. You start to wonder if you are doing something wrong. It’s already a task to get to know others even though that is what you want. You are afraid at times of talking to others because of this fear that you are going say something wrong.  When you are in a conversation with someone, you have to think of things to talk about and even though it might be a good conversation, you want to stop this talk because it feels like there is so much you have to do be a good conversation partner and not some freak.

I’ve learned that the issue is that people tend to be uncomfortable around autistic people– which makes social isolation even worse:

Autistics make other people uncomfortable, and we do this almost instantly upon meeting. In my communications classes, I teach about the 50 to 500 milliseconds during which most people develop first impressions. These impressions are difficult, nearly impossible, to counteract with evidence and familiarity.

Knowing us doesn’t undo the initial discomfort of meeting usThat is the cost of autism.

This paragraph from a person on Reddit puts the issue in stark relief:

I am socialised to show “support” for autistic people or I’ll face backlash. So here is me, and my true off my chest. You cannot force social change or change me by down voting me here.

I do not want to be friends with them. I do not want to date them. I don’t want to sit next to them on the bus or metro. I don’t want them as my colleague. I don’t want them as my neighbors.

Their actions can get disturbing and scary. From pushing people on the metro (yes I recognised the autistic children because of their school uniform), grabbing my hair (I happen to pass by a stop near a school for autistic children, it was really out of the blue) and making weird noise and hand gestures.

I also dated one once (didnt know he was autistic, we met online) and his lack of facial expressions is scary. Never mind dating etiquette, dating should be fun and all I felt was I am holding on to a robot with emotions and feelings….But the face is neutral and fixed.

I am sorry. You can hate me but you cannot change me. I’ll continue being a “bad human being” until I feel safe around autistic people.

Having autism means that making friendships, having connections with people is always a fraught exercise, and that has reprecussions in life. For example, some statistics say that only about 14 percent of individuals on the spectrum have jobs. One of the reasons that number might be so low is because of the difficulty of “connecting” with people. Interviews are as much about what kind of chemistry you have with the interviewer as it is about skills. When you are in the job, having a relationship with your supervisors and workmates can make the difference between getting a promotion or getting fired.

It shows itself in other ways. I’ve engaged people in fundraising over the years for churches and other groups I’m apart of. No matter how persuasive my writing is, the end result is always few if any donations. It’s not that people don’t like me, but asking for people to part with their money means you have to be able to make a connection with them. I know all the technical skills of writing a persuasive letter, how to present the request visually, but if I don’t have the “people skills” needed to make it happen then paraphrasing a passage from the Bible, I’m a clanging gong or loud cymbal.”

Can any of this change? Can I become learn now behavior that can make me more social and someone that doesn’t make people uncomfortable. The study which started this off would say that people need to be more accepting of the other ways people present themselves socially. Is that going to happen? I don’t know. What I do know is that the study seems to say that even before I go into that interview,or meet that new friend, people have already scanned me and made a decision.

I think at the end of the day, all I can do is try. That’s frustrating and it will not improve my situation. I guess you have to learn how to deal with rejection and learn how to move on.

The Trouble with “Normal”

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It has been sometime since I wrote something on autism/aspergers, partially because I didn’t have anything I wanted to write.  But I stumbled accross an article on Facebook that reminds me of the situation that I face on daily basis.

It’s been nearly 10 years since I was diagnosed with Aspergers or High Functioning Autism.  When I got the diagnosis, I was relieved.  It was something I could hang all of the difficulties I faced as an adult in relationships and employment. I was hoping that I could explain to my employers what was happening with me and that they would understand.

Boy was I wrong.

The problem with having High Functioning Autism is that you don’t look like you have autism.  I can “pass” well enough for people to think I don’t really have any issues.  But that’s not true.  A recent article on the challenges those of us with High Functioning Autism face explains:

If the media is to believed, the high end of the autism spectrum is peopled largely by eccentric geniuses—Bill Gates and Albert Einstein are often mentioned, along with Dan Aykroyd and Daryl Hannah—who by and large do very well indeed, though they march to the beat of their own drummer. The reality, however, is that “high functioning autistic” and “genius,” “business tycoon,” and “Hollywood star” rarely go together…They may also have significant challenges which stand in the way of living a comfortable life, succeeding in work or romance, or achieving a sense of self-worth. Those issues are made more challenging, in part, because they surprise and upset others who don’t anticipate odd behaviors or reactions from people who “pass for normal” in many situations…

While people with more severe autism are not generally expected to just suck it up and get through difficult moments, people on the higher end of the spectrum are expected to do just that…

Lastly, people with high functioning autism are, in general, very aware of their own difficulties and extremely sensitive to others’ negative reactions.

I’ve experienced this situation over and over. I can work to try to fix my mistakes, I can go over and above to show that I can do my work well and at the end of the day, it is not enough. I am told things that sometimes cut to the heart, even though you know that you’ve tried to be the best worker in spite of my shortcomings. But you have to suck it up and try to function even though you’ve been shamed and told that you aren’t a good worker. The thing is, you can try as hard as you can and at the end of the day, it. is. not. enough.

You have to suck it up, because you don’t look autistic.  Which means that people don’t take your autism to account.  Instead you are looked at like a giant f**kup.

And when your high functioning autism isn’t taken seriously, it affects you in future situations.  Work becomes a place where you are waiting for someone to point out a mistake you made and then, you overreact, fearing that it’s all downhill from here.  You end up not trusting people, because you fear them- you fear they will judge you and that your job will be in jeporady.

So, work becomes a minefield, one that can become of your own making.

What I would like to see from people at work not just for me, but for anyone with high functioning autism is to stop assuming things. As Ashlea McKay notes:

Don’t think because I’m a successful adult female that communicates verbally that my existence is ‘mild’ or that I ‘don’t seem that autistic’ to you. That is insulting to both me and every other autistic person on the planet. I know you’re just trying to understand and have probably heard a number of things about autism over the years, but instead of assuming what it means to be autistic, just ask.

If someone tells you they are autistic, ask a damn question as to how you can help them be the best employee. Don’t assume. Don’t just automatically go to belittling them. Sometimes people are just not good employees, but sometimes we just need help and encouragement.

One thing that I am learning over time is that I need to be willing to advocate for myself.  Simply telling folk isn’t enough. At times I might need to politely push back.  Because I think sometimes people don’t understand things unless they are hit metaphorically by a 2×4.

So, when an employee tells you that they are autistic, talk to them. Learn all you can about autism and how to be a good manager to them.  Just because they appear “normal”doesn’t mean you can treat them as normal.

The Trouble With Normal

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One of my favorite cartoons growing up was the 1975 television special based on Maurice Sendak’s books with songs by Carole King.  Really Rosie was the name of the special and the song that I remember the most is “Pierre, the Boy Who Doesn’t Care.”

Pierre is a little boy that seems to go through life not allowing himself to feel for people and events that happen in his life.  The climax of the song and the story has Pierre willfully getting into the belly of a lion, not caring what happens.

I’ve started a new job that supplements my pastoral gig.  I think it will be a wonderful fit, but as the first day approached, I was filled with anxiety.  It’s an anxiety that I think has to be common to persons on the autism spectrum; that fear that you are going to mess things up and get people to be dissapointed in you.

The thing that I’ve learned over the years is that neurotypical people can never really understand those of us on spectrum even when we are honest about who we are.  They still won’t understand because it is not them or someone that they love.  They see slip-ups as a sign of being a bad worker or even worse, someone who doesn’t care.

An article from a Gwendolyn Kansen explains the challenges people on the spectrum face when they enter the job market and why it can be a challenge to have a full time job:

You start out upbeat. You were excited about this. You got through the interview just fine because you were so happy to be there. They might have even called you a good communicator.

You chat with your coworkers. People compliment your work. You might miss a few things, but you’re doing such a good job that they forgive you for it. People help you when you can’t do something.

For a while, you’re golden.

Then it gets harder.

As the work piles on, you start making mistakes. You lose something. You send a poorly-worded email. You realize that everyone is working faster than you are.

The multitasking is killing you. You ask your supervisor for help. You’ve been asking her that a lot by the way. Especially with sequential tasks. And she’s getting annoyed. She says you need to “work more independently.”

If you do your work without help, she says you need to “show more initiative.”

Either way, you are clearly not handling this well.

You don’t make small talk anymore. You don’t have the energy for it. Those people who were so nice to you at first are now starting to avoid you. The important assignments are now given to somebody else.

You know you look disinterested. And vaguely creepy. But you also know there’s not a damn thing you can do about it.

None of this means my new job is going to head south, but there is always that fear that my little brain won’t be able to keep up.

None of this is better in the church world. Churches are supposed to be places of grace and mercy, but since its a human institution, it means that people don’t understand you and your “shortcomings” even when you try to explain it to them.

Which is why “coming out” to your employer is not always the best thing. Even when you tell them, they don’t seem to understand and they get angry when you miss something during your work.

I think that’s because person with Aspergers or High Functioning Autism appear normal.  That means, people can’t see our disability.  What they see is a person that seems normal enough doing a poor job on whatever project out there and someone that seems to not care.

You yourself know you are trying, but it seems lost on others.  They may have given up on you, believing you are utterly hopeless.

This then leads to you wondering if maybe they’re right.  Maybe you start to believe you really did something wrong.  Maybe if you were better, tried some trick to remember tasks, learned to smile more and kept your head down you wouldn’t be in this mess. Maybe it means being more…normal.

But there’s the rub. You aren’t normal.

Yes, you can mask some of your idiocyncrasies, but at the end of the day, you are going to be you, and those things that place you on the spectrum are going to come out.

What I’ve come to learn is that in the workplace, you have to do a few things. First, you have to accept you aren’t normal and never will be. And that’s okay.  This is who you are, who God made you.  Therapy and medication can temper some of the behaviors, but you are still going to do things that will piss off your coworkers.

I’m a pastor on the autism spectrum. I’m a web content specialist and on the autism spectrum.  This is who I am and it won’t change and I don’t want it to change.

Second, we need to urge people around us in our workplaces to learn more about autism.  But don’t expect that they will get to learn.  People think they know what autism is, and they don’t really bother to learn about how autism can show itself in people. But keep telling them.  Maybe it will sink in to folk.

Third, learn from your mistakes.  You are going to make mistakes in the workplace.  When you make a mistake, learn what you did wrong and correct it. And know you will make another mistake again. And you will learn from that.  People might not like that you make those mistakes, but they are the only way we learn.

Fourth, we have to learn to have a thick skin.  Because people think you don’t care, because for some reason you make them angry, people will say some things that will sting.  You have to learn how to not allow it to control you.  It’s easy to let those words ruin your whole day, but you have to be able to do your work even with the pain.  As I’ve said before, people don’t understand, so as hard as it is to admit this, you can’t expect sympathy from people.

These are just a few tips I’ve learned over time.  Following them doesn’t mean your job/vocation will be smooth sailing, though. People will always notice that something is off.  They will always notice you aren’t normal.

But we don’t have to be normal.  We can’t be normal.  Just do what you can for the glory of God.

 

Repost: The Importance of Dandelions

Since April is Austim Awareness Month, I wanted to share this post from exactly a year ago.

As I’ve looked back over my work history, there has been one overwhelming feeling that comes up over and over again: shame.

Since I entered the workforce in my 20s, my job history has been one of seemingly disappointing people.  I never met people’s expectations of me.  It wasn’t for lack of trying.  If someone said I did something that was not up to par, I would try to be better.  But the damage was done and I was looked at as incompetent.

When I got my diagnosis of Aspergers in 2008, I was hopeful that now I could find jobs where I would excel.  But in the eight years since knowing I was autistic, I’ve learned that while I changed, employers didn’t.  I learned that sharing my diagnosis didn’t help me at all.  Many folks didn’t understand the diagnosis and still saw some of my quirks as not caring or incompetent or what have you.

Even in the years following my diagnosis, I’ve tried to correct some of autism related problems to better fit in.  Not that it helped.  I think I was still viewed as a disappointment, a failure.

At the same time, I knew I had skills. I was a good communicator. I was okay with a camera.  I was getting better creating websites.  I was surprised I could make graphic designs.  I’ve been leading a church as pastor for almost three years. I had some of the skills needed to be a good employee to someone, but the package wasn’t attractive to employers.

Recently, I was reading fellow Michigander, Ron Fournier, a writer for the Atlantic and National Journal. He has a new book out about his learning to accept and appreciate his son who is autistic.  He shared a quote from Thorkil Sonne, a Danish entrepeneur who wanted to provide a positive work environment for people with autism, people like his son. Sonne used an interesting analogy to describe people who are autistic and their gifts to society:

To most people, the dandelion is nothing more than an annoying weed – something to be rooted out of our lawns and flowerbeds. But what a lot of people don’t know is that, when cultivated, the dandelion is one of the most valuable and useful plants in nature. In many parts of the world, the dandelion is known for its nutritional, healing and medicinal properties. The value of a dandelion is very much dependent on our knowledge and perception of its value.

Most of us don’t want dandelions in our lawns – they don’t fit there. But if you place a dandelion plant in your kitchen garden, and cultivate it, it can turn out to be one of your most valuable plants. Dandelions are used to make beer, wine, salads, and natural medicines. Quite simply, if you choose to cultivate dandelions, you will reap their rewards. So, is a dandelion a weed or an herb? You decide. The same can be said for individuals with autism. The value of what you see depends on your level of understanding and accommodation.

Hearing this made a lightbulb come on. I’m a dandelion.

Part of this sounds like that whole “I’m-a-special-snowflake” crap that has been pushed around these days. But this is exactly how someone with Aspergers or autism can feel. On the downside, they might feel like a weed, a nuisance to the rest of the neurotypical world. It’s how I’ve felt at times.  But the thing is, dandelions have benefits as well.  What might not fit well on a lawn, might make a good wine or a balm.

But I think most employers, even in the nonprofits, tend to go for flowers, people that are “beautiful,” put-together, who know how to make small talk and aren’t moody or plain weird.

Maybe this is why the unemployment rate among those with autism is something like 85 percent. (No, that isn’t made up.)  Our work culture is one that is geared towards efficiency.  We want workers we don’t have to really train, let alone accomodate.  So what happens when you get someone who is autistic and needs to be cultivated and isn’t geared towards being efficient?  They don’t last long in their jobs.

I don’t think the job market was always like this. I think there was a time when companies and groups were interested in investing in the worker. Of course those with autism were locked up in institutions, so the old days weren’t so good. But I think we need to bring back the notion or nurturing workers instead of making them fit some template.

What needs to be done is a radical overhaul of how we see those with autism.  In the profile of Somme, it is noted that employers need to gear themselves to be places that can accomodate autisic workers:

One significant challenge in utilizing individuals with autism is that many employers don’t always see the upside in hiring individuals who can be considered rigid and moody or a have poor communication skills. Because of this, Specialisterne focuses on developing new approaches that allow businesses to tap into the potential of this unique demographic. Sonne believes that innovative employment programs, that focus on individuals with special needs, can turn out some of the most diligent, dependable and productive employees.

 

Sonne’s company Specialisterne, has a unique approach in how they hire and work alongside persons with autism:

Work Design: Traditional approach: Work design derives business needs from stable strategies and plans. Jobs are designed by determining the tasks a given job requires, translating these tasks into job descriptions and then placing individuals into stable organizational roles.

New Approach: Design jobs to maximize potential for particular individuals to create value. Project roles are customized so they “work” for short-term needs but can evolve as needs change.

But while I’m glad for Sonne and Specialisterne, I have to deal with this world, the world where autism is still a puzzle or frustration.

So, at the risk of offending potential and future employers, I will say this: I’m a dandelion. I am rough around the edges. I am not pretty, I am not great at small talk and I will not be easy to get to know. But if you work with me, you will see a creative side that can produce things you never even thought of. If you can see me as more than just a weed to be removed I can help your concern take it to the next level.

But you are going to have to work with me because I am not going to fit into your template. I’ve tried and I can’t. If you what you want is someone you don’t need to train, to just “set it and forget it,” then you are wasting your time with me. But if you want help mold someone to bring out the best in them, well give me a look.

I’m done trying to please people who won’t understand. I’m a dandelion, a person with autism. Either accept this and work with me or don’t. Either way, I’m done playing games.

Playing Checkers in a Chess World

 

Foiled again.

A few weeks ago, I got a call from a local organization looking for someone like me to interview for an open position.  I was quite excited and hopeful that I might get a new position to supplement my pastoral work and other part time job. They had talked about getting some information to me soon.

This is where I made my big mistake more than once.

When you tell someone with High Functioning Autism that you will do something soon, we expect that you will do this….well, soon.  In job speak, soon could mean later today or it could mean a week from now.  But not knowing the difference, I called back.  A week or two passed and I was still expectant.  I had already checked in a few times and when I last called, I could tell that there was a bit of impatience, which is understandable.  The job had to be posted, they had to wait for resumes and then a committee had to look those resumes over.  I get that now, but my brain was focused on the word soon.  And it has probably become my downfall.

Looking for work with autism can be challenging. In many ways it’s just like meeting new people. Because of our lack of theory of mind, we don’t really know what the other person is thinking.  I can be unsure as to how to respond to people.  Sometimes I don’t respond, and that gives people the belief that I am indifferent.  If I respond to forcefully, I come off as desparate or an irritant.

Also, so of what employers say is not to be taken literally.  If they say they will get back to you in a few days, there’s a good chance that it will be more than a few days.

The interview is no better.  You have to meet someone you’ve never met before and allow them to ask questions that you have to try to answer at that very moment. All the while you wonder what they are thinking and you are wondering if you are saying everything they need to hear.

It’s also hard to not get over-excited when someone contacts you about a job.  It’s already difficult to find a job, so when someone contacts you, you feel like someone actually wants you.  But job hunting is more of a game of chess, trying to look out several moves ahead to plan the move that might get you the job.  You can’t or shouldn’t get over-excited about a phone call because it is the first move in many moves. But someone with HFA is probably focused at that beginning point and not looking at all at the moves coming up.

Actually, the person with HFA is probably playing checkers instead of chess. As a business blogger noted, one game is rooted in the moment, while the other is based in the future:

Want to know one big difference between a game of checkers and a game of chess? It’s the number five. That’s the average number of moves ahead that a Class A or better chess player will generally be thinking throughout the course of a game. While checkers is primarily played in the moment, chess requires a complex strategy that is often won by thinking ahead.

With this prospective employer, I was playing checkers.  I was living in the moment which is usually where my brain resides.  But in this situation the person on the other side of the phone has to play this as a chess game, having to look at several moves ahead.  This person might have said something that made it seem he was playing checkers, but like all employers he was playing chess.

But that’s hard for someone like me.  What I hear and comprehend is more checkers; bounding and leaping all over the place.  It’s hard to not take the words of someone promising good times ahead start leaping all over the place.  But overeagerness can turn an employer off.  It’s like starting to play checkers on a chessboard.

Like I said earlier, I probably ran this poor person off with my eagerness.  A lesson learned.  I just have start to remember that this is all a chess game and while my brain chemistry isn’t easily programmed to think ahead, I have to  learn.

If this person did show interest in spite of what I did, I will be a happy man.  But in the meantime, I need to bone up on being a better chess player.