On January 31, I got the phone call that you always dread, at the what I’ve been dreading for nearly 10 years- that call at 4 in the morning. Long story short, I learned that my father had died. As Daniel and I got ready to fly from Minnesota to Michigan, I left a text with John Paulson just letting him know I wasn’t going to be at church this Sunday. I don’t know what all John did, but he was able to marshall the forces of the church to make sure church went on smoothly. Retired Pastor Paul Ficzeri preached in my stead.
My Dad had been in declining health for years. Congestive Heart Failure and COPD wore him down. He entered the hospital on New Year’s Day with really low blood pressure. He was taken to a transitional care facility to recuperate and hopefully get well enough to go back home. His time at the facility wasn’t easy. Unlike other hospital stays, he wasn’t bouncing back. I had started to think he might end up at this facility permanently- something Mom had wondered as well.
He actually was feeling better the day before he died, my Mom said. She offered to stay the night, but he wanted her home. A nurse came into wake him up on that Saturday morning to get him ready for the day and he didn’t respond. Dad had died in his sleep after 85 years on this earth.
Grief is something that always fascinates me. I’ve always wondered how different folk grieve a loss. I’ve also been interested in how someone on the autistic spectrum mourns. People might think that those on the spectrum don’t feel anything, but the fact of the matter is we feel a lot.
My sign of mourning is a physical one: I feel what I can only explain as a heaviness of heart, as if my heart is crying even though I’m not visibly crying. I felt that way a few years ago when my Uncle David died, and I felt it again when my cat Morris died a few months later. When my other cat, Felix died a year later, the heavy heart was there again.
Over the last week, I noticed that my heart was truly heavy again. I might not be crying up a storm, but my heart was…is weeping for my Dad.
I share this because we all do grieve differently. For some grief is a slow process and for others it’s “faster.” Some people cry visibly, others cry in secret. Those of us with Aspergers also grieve in ways that might seem odd, but it is grief.
I miss my Dad. I think that my heavy heart will come and go for a time. But a smile comes to my face as well: my heavy heart is a sign that I am truly human after all.
Note: The top photo was taken by my husband, Daniel shortly after we arrived at my parent’s apartment. On one of the bed posts were my baby shoes. This is what Daniel wrote on Facebook describing the photo: “A father’s love for his son…hanging on his father’s bedpost are Dennis’ childhood shoes.”
The bottom photo was taken with my Dad in November 2013.
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.
Note: I wrote this earlier this year about relationships. One thing I’d like to add: tell people that you care for them or that you are their friend. For someone like me with autism it can make all the difference in the world.
When I was in high school, I ran track. I didn’t run well, but I did run track. Practice would take place after school. I remember heading into the locker room to change, and passing by this front room set aside for physical therapy. Every time I passed by there were people my age chatting and having a good time.
One day, I decided I was going to join in. I came in after practice and walked into the room. Unlike other days, the room was mostly empty save for one student who was being attended to by a teacher. I walked in and sat down hoping to engage in some conversation. The teacher stopped what he was doing and looked at me. “What are you doing here?” he said. I gave him a confused look and started to think I had made the wrong decision. He pointed to the door and ordered me to leave. I walked out feeling ashamed that I had even bothered to come in.
I share this story because it serves as an example of the ups and downs of one person with Aspergers trying to be social. Looking back, I probably should have known that social situations change. But in my mind, everything repeats. If there were people goofing off one day, then they would be there everyday. Obviously there were time it was okay to be in the room and times this wasn’t possible. But that nuance was lost on me.
Relationships for someone with Aspergers is like walking into a room that’s pitch black. You can’t see anything. The darkness is scary and you feel very alone. The result is that you are always scared, scared that something in the darkness is coming after you.
This all makes it hard to simply be. You are constantly worried you are going to say something stupid and when you do, all hell breaks loose. So, you withdraw feeling more alone and isolated.
It’s not just that you don’t know how to act with potential friends, it’s also that you don’t know how to act with fellow co-workers. A conversation that I intended to be helpful was interpreted as being hostile. I nearly lost my position because of it.
And let’s not even talk about romantic relationships.
In many ways, I’m still that 16 year old boy trying to figure out human relationships and failing miserably. It’s trial and error, finding out what works and what doesn’t.
The thing is, after being rapped on the nose more than once you start to become risk averse. You feel like a trapped animal with eyes darting about; seeing others as a potential threat or potential friend.
Blogger and fellow aspie Penelope Trunk has said that people with Aspergers don’t have friends and don’t have the emotional need for friends. I tend to disagree with this. I want to have friends, especially close ones, I just don’t know how to start a friendship let alone maintain it.
I will be writing a blog post on partisanship and the church, but right now I need to chat about dealing with self-esteem when you are on the autistic spectrum.
People with Aspergers especially deal with low self-esteem, partially because of being bullied and partially because we tend to isolate ourselves when we’ve been bullied. For me, there is this sense that I’m stupid, which isn’t true, of course, but it is there because of the low self-esteem. Sometimes experiences tend to bring people down and it is a lot harder to shake things off than it is for someone who is neurotypical.
Last year, a blogger who also has Aspergers explained why low self-esteem goes hand-in-hand with Aspergers:
The primary reason that most people with Aspergers, including myself, have self esteem issues, is due to bullying and people not being willing to make allowances for our social mistakes. Personally I have never met anyone with Aspergers who did not experience bullying in their school years and often beyond. Being socially awkward identifies us as targets in the playground. The fact that a lot of people with Aspergers are also physically clumsy doesn’t help matters at all. I always found that certain aspects of my Aspergers made me more sensitive to childhood bullies than other people. One example is the fact that I am a very literal thinker. Until a couple of years ago, I couldn’t understand that people would say spiteful and malicious things that they knew to be untrue just to hurt somebody’s feelings. I always assumed that people were just being honest and genuinely thought that I was ugly or a freak. If you are told something enough times, you internalise it and it becomes part of your self image. Many children with Aspergers are miserable in their school years-they are often isolated and excluded from playground games. If the only reaction your peers have towards you is to walk away, how are you supposed to develop a healthy self image of yourself as someone who is nice to be around? Of course, having these sorts of self esteem issues lead, in turn, to low self confidence, particularly in social situations where you feel that others will be judging you and looking for your flaws so that they can take great pleasure in pointing them out and ridiculing you for them. This compounds our social awkwardness and thus the vicious circle continues. At almost 27, I am still suffering from the effects of experiences I had before anyone even knew that my difficulties had a name, I still have days when I think the world would be a better place without me in it although, thankfully, these days are now few and far between. I always say that, until you have looked in the mirror and genuinely despised the person staring back at you, you will struggle to understand just how pervasive and destructive low self esteem can be.
It can take years for someone to get to a point where they feel good about themselves. I remember early on in ministry, a fellow pastor ripped me to shreds. It took a long time to piece back together my confidence. Once I did get it back, it happened again a number of years ago. And again, I had to rebuild myself, a process that took years. What neurotypicals can shake off takes a long time for someone on the spectrum.
Then there are what one writer calls Self-Esteem attacks. When someone with Aspergers does something perceived as wrong there’s a sense of shame that can act like a panic attack. Blogger Amy Murphy explains:
“Self Esteem Attacks” occur whenever a person with low self esteem does or says something that he afterwards deems to have been inappropriate, stupid, rude, obnoxious, off target, or inaccurate. At that time, the person may experience immediate remorse, excruciating anxiety, his heart racing, his face turning red, a sinking feeling of embarrassment, depression and/or devastation. Wishing he could sink into the floor or disappear, he may immediately look for a way to escape. He may feign illness, sneak out without saying anything, or just become totally silent, hoping not to be noticed. He will believe that everyone saw his blunder and is thinking poorly of him, maybe even laughing at him. This is a full blown Self-Esteem Attack that may last for minutes, hours, even days during which he berates himself, is fearful of seeing anyone who was in attendance at the time he made his “mistake,” and remain seriously depressed.
I’ve had moments where I wanted to hide and just curl up into a ball after making a mistake. On the outside, I might not show much emotion, but on the inside I start to feel like crap. I berate myself and get stuck in feedback loop of self-loathing. It’s not pretty.
The final thing to talk about is how this low self-esteem can affect relationships. I think a lot of my friendships have been stunted out of my own fear that I’m not good enough, that I can socially engage others and reminders of other past relationships. So, I remain distant,to protect myself and because I don’t have confidence that I could be a good friend or fear that I will say or do something wrong. This has happened in romantic relationships as well, but it happens more frequently in friendships. Gavin Bollard has a good blog post on how self-esteem can wreck potentially good relationships.
One thing about how my faith and self-esteem. I truly believe what has helped me not totally fall of the deep end is my faith in God and the belief in the concept of grace- that I am loved and called by God even when I mess up and feel like I’m stupid. It doesn’t take the self-esteem attacks away, but it does surely blunt their punch.
I was a bit leery of sharing this. I don’t want to focus on myself or get into a pity party in front of others. But I do want to share what someone with Aspergers deals with on daily basis. The world can be a harsh place for those of us on the spectrum and people who don’t have autism need to understand that.
I want to end with a quote from Steph, a woman with Aspergers, about understanding how people with autism deal with self-esteem:
Next time you see someone with Aspergers or autism, please remember how they may be feeling inside and have compassion for them. We struggle daily to get by in a world which often seems to revel in making us feel like failures and sometimes just a small amount of kindness can make our day so much better.
Every so often, more often than I’d like to admit, I get this feeling that I am a failure- especially when it comes to this pastor thing.
I’ve been at my church for a little over a year. I think I’ve done a lot to help the congregation and to encourage them. I think this church is at a different place than it was last year. And yet, there is the feeling that I am not doing a good job, not good enough.
Part of this is dealing with some issues that took place in my life a few years ago that I am still trying to get past. But mostly, I feel like I haven’t done enough to attract new members.
I’m probably not alone in thinking this way. A lot of us do various things to help increase the visibility of our congregations. We engage in social media. We improve the church website. We host community events. And the result is…not many people darken our doors.
For me especially, it’s been frustrating. I’ve been trying to establish relationships with those who left the church just before I came. I’ve written, called and done everything short of showing up at their doorstep (and no, I am not trying that). I may have to just give up trying to extend a hand to them. I know that I’ve done the best I could, but I know that there is that voice somewhere that says I’m not good enough. If I were better, I would have made contact with them and woo them back to the church.
Then there is this feeling that I’m not reaching out to the community. If I were more outgoing, then maybe things would be better. Maybe if I didn’t have Aspergers, I would be better able to communicate with others and then there would be more members. I would be like that other pastor who can announce an event and 50 people show up.
All of this is nonsense to some extent. Some of the problems facing First Christian started before I came there. Some things are the result of changes in culture. But when few people show up to an event, or when few visitors show up to worship the questions always come flooding back.
If you want to know why so many pastors end up leaving the ministry, it’s because we tend to think that the success or failure of a church is all on us. Pastors end up shouldering a lot of responsibility on themselves.
In the end, I have to accept some grace. I am not all that. All I can do is be faithful. I try to do a good job, try to encourage the congregation, but in the end it is all on God. It’s God that I have to trust in, but that’s hard. I think we pastors are taught or at least we think, that we have to be demigods. I think God has to sometimes hit pastors upside the head and say to them “there is only one God baby, and you are not it.”
First-St. Paul might grow numerically and it might not. I am hoping for the former and that has been my prayer. But in the end, it is up to God. My job is to preach God’s hope to the people and hope they will see God at work in the world.
I just need to tell myself this over and over.
But of course that is not how life works. I am different from others. And that difference can lead to some problems; not only to those of us with Aspergers, but of course with those neurotypical friends and colleagues around us. Most people don’t really understand what it means to be on the spectrum. Even if they say they understand, the mostly likely don’t get it at all.
So, this is just some things that I’ve observed in my life and others that should help in dealing with someone with Aspergers. It’s not an expert analysis, it’s just my thoughts.
No, I am not psychopath. Because I tend to not express outward emotions like others, there have been people who think I just don’t care about anything. I can see why after a school shooting people hone in on the assailant’s problems, such as autism or Asperger’s. I think that’s rather lazy thinking. No, those of us on spectrum aren’t perfect, or angels and there are very likely people who are evil. But just because we don’t express emotion in the same way as others doesn’t mean that I’m going to go and blow away a classroom of fifth graders.
Aspergers is not quirk. One of the problems in modern culture is likening autism to eccentricity. It’s one of those cute things that you like about people. Let me be clear: Aspergers is not cute. It is can be a thorn in my side. When you get mad at something I said or did and conclude that I don’t care or that I’m incompetent, you will realize that this is not cute. Having Aspergers means having problems with communication. I can say something that comes off as brash and I was trying to be honest and helpful. So stop thinking that I’m the “crazy uncle.” Because if you think that and then we reach a misunderstanding, you will start seeing me as that ***hole, instead. Being an ***hole is definitely not cute.
But I do have quirks. I know, this sounds contrdictory, but stay with me. While Aspergers isn’t a quirk, it can produce some odd quirks that people need to understand. One of my quirks? Phones kind of scare me. Of course, I will take a phone call, but it’s just been difficult to use the phone- mostly because it makes me feel less secure. I remember when Daniel and I were dating. He lived in Grand Forks, North Dakota and there were a lot of occasions where I perferred using online chat than using the phone. It’s something I’m working on, but for a lot of people it just seems weird.
I actually do care. I tend to think most people see me as standoffish, which has probably led to a lot of people keeping their distance from me. What I wish people understood is that I do care about my friends and family; probably more than you know. The thing is, I can struggle with how to share that. Sometimes I come on too strong and freak people out; sometimes I’m too laid back and people think I’m uncaring. I’m still trying to figure this out, so if you want to be my friend, be patient; I’m not trying to be a jerk.
Small Talk is a challenge. I’m 44 years old and I still have a problem with small talk. What I’m learning is how much small talk is the basis of relationships both platonic and romantic. I think a lot of friendships never got deeper because I found it hard to just shoot the breeze. So be patient, I’m still learning about how to talk about the weather.
My intentions are good. I’ve been in a few situations where my actions were interpeted as being disrespectful. I can remember one situation where my response was accepted badly. I tried to explain the best I could (which is also an issue with someone with Aspergers), but I was still viewed in a highly negative view. What I wish most people knew is that for the most part, I’m trying to help. I’m not trying to being disrespectful.
There are more things I could talk about, but not right now. What I hope this can do is help people understand someone who has Aspergers. We aren’t bad people if you get to know us.
As I read a number of autistic bloggers, one thing becomes very clear: there are a lot of people with chips on their shoulders.
At some point, some autistic blogger will write a post about how someone somewhere at sometime did something that was offensive. So they write a post basically ordering people to stop doing whatever it is they are doing that the blogger finds offensive. But they usually don’t stop there. They then question the person’s motives, seeing them as not really caring about the autistic community.
I always find these posts tiring and whiny. Yes, some people do things that are insensitive; but we need to be more selective in dishing our outrage. For example, if you don’t like that someone calls you “a person with autism” instead of “autistic person.” You don’t need to act like this person or persons set fire to your house. Simply say to someone what you prefer. Sometimes people need a gentle correction, not the full force of political correctness.
There are things that do warrant outrage. There is a place to be angry. But not everything has to be treated as a capital offense.
There are times for outrage, but there is also time for educating. Sometimes we need to give a light touch, not a punch to the gut.