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.

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.

…to give you a future filled with hope

I know the plans I have in mind for you, declares the Lord; they are plans for peace, not disaster, to give you a future filled with hope.

Jeremiah 29:11 (Common English Bible)

Looking for employment is not an easy endeavor. In fact it can be soul-crushing. But then, so can having a job. Or losing a job.

As some of you who follow this blog may know, I have a part-time call at a church in suburban St. Paul, Minnesota. The reason I could do this part-time call was because I had a pretty good fulltime job. That is until two days before Christmas 2014 where I was let go from my position.

Let’s just say Christmas was hell that year.

shattered-dreamsI was hoping that I would find another good job soon. After all, I had experience and I was able to learn how to be sociable and keep my Asperger quirks to a minimum. But nearly two years later, I still haven’t found anything. I am thankful that I have found some part time jobs and have been able to stitch together a living, but it’s not even close to what I was making before.

Since early this year, there have been a few opportunities that presented themselves. I thought I did my best on the interviews sent some of my best examples…and the job went to someone else. I could say race was a factor, and there is some truth to that, but I can’t just rest and make excuses. I have to keep getting out there, but it gets hard to pick yourself up and try again, especially when you think you have the skills needed to do the job.

One of the things I’m learning is that all the job hunting trips people tell you to try to get a job don’t seem to work…at least not for me. I haven’t found that “hidden job market.” All the people I know haven’t really led me to a job. I’ve tried meeting with a few people just to get ideas and a number of them never bothered to respond.

All the while I remain somewhat jealous at my husband, Daniel. He doesn’t have a background in communications that I have, but he has been able to get two jobs as managers. I have some more skills than he does. He gets noticed and I don’t. (That could be that he’s white and I’m black.)

Maybe I have to considered that I’m not going to have a job where I can use my communication skills. It just seems that I’m not wanted, no matter how much I’ve improved my skills, no matter what I do to add value to an organization. For whatever reason, I’m not what people want in a prospective employee.

I started this post with a familiar, at least to me, passage. Too often, Jeremiah 29:11 is seen as a route to success. But I don’t think this is what this verse is about, especially since what I’ve learned about Jeremiah is that his life wasn’t that awesome.

I tend to think that it means that no matter how bad life gets for people, no matter how things don’t go according to plan, God is there to give us hope, to give us peace, to give us a future. It may not be the future we wanted, but it is a future with God, and I’d rather have that than nothing at all.

I will continue working with the jobs I have now and being a pastor to the little flock God has left me with. And I will try to keep looking for work. I have hope, not that things will work the way I want it to be, but that wherever I land, I will have God’s hope. It’s all I got.

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.

The Importance of Dandelions

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.

Why I Hate Job Hunting

As said earlier, I lost my full time position on December 23.  This means that I have to look again for open positions.

young-unemployed-410305Some people are energized by the job hunt.  Not me.  It fills me with dread.  You feel that the cards are stacked against you, no matter how hard you try.

It’s also hard for me to look for another job after the my experience at my soon to be former job.  I had worked hard in that position, innovating and doing things that hadn’t been done before.  And I still got laid off.  I know that it wasn’t because of my work performance (which was excellent), but having done all that I did and still get canned makes you a little gun shy about starting over.  Why be productive and putting forth 110% percent if your reward is to lose your job?

I know I have to get over that and get back on the horse as they say.  But that horse really kicked my ass hard.

The other fear is that I’m not the most attractive candidate.  It’s not that I don’t try to show my experience and knowledge, I do.  It’s just that all my work rarely gets me what I want.  Others can put in a resume and get an interview like that.  Me?  I can send in a resume and never hear back.

There is always something that makes me wonder if race has anything to do with it.  There have been studies that show that black men are at a disadvantage in the job market.  I do think that has been played out in my past, maybe not overtly, but more likely than not in the silent biases that hiring managers have when they see someone like myself as opposed to a white man.

But that complaint is a double-edged sword.  If I say that too loudly, some will say that I haven’t tried enough or white folk will talk about how it hard it has been for them to find a job. Even with that against me, I have to get out there and try.

Maybe the thing that bothers me the most is that being laid off…more than once…tends to set me back.  I seem to never be able to get ahead enough to be able to make more in salary, to be able to pay off debt and save for my retirement.

I know I will find something.  I just wonder how long it will be before I find it and how much will not having full time work will set me back financially-again.

Sorry for the maudlin job post.  I will try to get back to focusing on religion soon and go easy on sharing my woes.

Dennis Sanders, Sacrificial Lamb

So, a few days before Christmas, I found out that my position was eliminated due to budget cuts.

Needless to say, I was devastated…and I still am a few weeks later.  The sad thing is that this isn’t the first time that this has happened to me.  I’ve received layoff notices more than once. It’s also part and parcel of my long work history, one where work and I don’t seem to get along.

It’s not that I don’t want to work: quite the opposite, I love to work, I love being industrious.  But in the 25 or so years in the workforce, it has always been a struggle to find employment and a struggle at times to maintain a job.

Part of my problem is being on the autistic spectrum.  My communication difficulties make it hard for potential employers to connect with me.  A lot of job-hunting is people-oriented and I have a time figuring out how to best present myself to a potential employer.  How I present myself can probably give off the message to people that I don’t care which is the total opposite of what I mean.

But the other part of the problem is that I seem to always be “layoff bait.”  In several instances, when an organization is facing some kind of financial problem and they need to cut staff, I seem to always been at the top of the list.

I wish I knew why.  Was I not a good enough worker?  Was I not friendly enough?  Why didn’t the other guy that sits around all day not lose his job?  It feels as though there is an invisible sign that says, “please cut my job when the finances get to dicey.”

What this all means for me is going back to square one and starting over again.  When I was 25 or 35 I could do that, but at 45 I should be much farther along.

I’m also cruelly reminded that I can’t write my own ticket.  I’m not so desirable that I get to keep my position and I’m not so desirable that other organizations want me.

I understand that budgets need to be balanced.  But I wish it wasn’t me that always has to be the sacrificial lamb, the “surplus man” that is considered a luxury in leaner times.  I’d like to not be the guy that people feel sorry for.  I’d like to not have to rely on others, hoping they might pass my resume along to others.  I’d like to feel that my job is vital enough to the organization that people don’t think my work can be easily done by others. I’d like to be part of the solution when organizations have to economize instead of just being asked to clean out my desk.

So, I look for another job with some trepidation.  Will this new job just be like the last one, a position that can go away at any moment?  Will I be viewed as an important and vital part of the team?

I’m thankful for the jobs that I have had in that they have given me rich experiences and skills.  But I’d like to not end up on the altar of balanced budgets.

Note: I still have my part-time work as pastor, so it isn’t a total loss.