One of the difficulties of being a “high functioning” autistic is that it is in a way an invisible disability. For most people, when they look at someone like me, they see a “normal” person. Because they see a person that seems to act just like them, it makes it hard to understand when things go wrong in that person’s life. For the uninitiated, some difficulty looks more like laziness or being defiant which can have severe consequences in the high functioning autistic’s life.
The sad thing is that the uninitiated is basically everybody. There are a few folk who “get it” and are able to accomodate and encourage the high functioning autistic, but most people don’t understand it, even when you try to explain it. And the result down the road are broken relationships and (possibly) fractured employment.
Physician Lisa Jo Rudy writes about the problems that someone with high functioning autism faces. I want to share a few that I have faced in my own life:
Social “cluelessness.” What’s the difference between a civil greeting and a signal of romantic interest? How loud is too loud? When is okay to talk about your personal issues or interests? When is it important to stop doing what you enjoy in order to attend to another person’s needs? These are tough questions for anyone, but for a person on the high end of the autism spectrum they can become overwhelming obstacles to social connections, employment, and romance.
Anxiety and depression. Anxiety, depression, and other mood disorders are more common among people with high functioning autism than they are among the general population. We don’t know whether the autism causes the mood disorders, or whether the disorders are the result of social rejection and frustration – -but whatever their causes, mood disorders can be disabling in themselves.
Lack of executive planning skills. Executive functioning describes the skills we use to organize and plan our lives. They allow typical adults to plan schedules in advance, notice that the shampoo is running low, or create and follow a timeline in order to complete a long term project. Most people with high functioning autism have compromised executive functioning skills, making it very tough to plan and manage a household, cope with minor schedule changes at school or at work, and so forth.
Difficulty with transitions and change. Lots of people have a hard time with change — but people with high functioning autism take the issue to a whole new level. Once a pattern is established and comfortable, people with autism (by and large) want to maintain that pattern forever. If a group of friends goes out on Wednesdays for nachos, the idea of going out on Thursdays for chicken wings can throw an autistic adult into a state of anxiety or even anger.
Difficulty with following verbal communication. A person with high functioning autism may be more than capable of doing a task — but unable to follow the spoken instructions provided. In other words, if a policeman says “stay in your car and give me your license and registration,” the person with autism may process only “stay in your car,” or only “give me your license.” The same goes for instructions given, say, at a ballroom dance class, at the doctor’s office, or by a manager in an office setting. As you can imagine, this can cause any number of issues, ranging from serious problems with the police to inadvertent mistakes at work.
Most of my difficulties come to fore in two areas: relationship and employment.
When it comes to relationships, I am usually bad at figuring out social cues and basically how to be a good friend. The message it sends is one of being aloof and it tells someone that I don’t care, which may be the farthest thing I want.
When you realize this, that’s when the anxiety comes in. Questions flood my brain. How do I act? What do I say? How do I try to look cool and try to “pass?” All of this uncomfortableness makes me want to distance myself which causes people to again think I’m cold and uncaring. (I’m this way even online. It takes me a while to compose a note to someone; fearful I’m going to say the wrong thing.)
So a lot of my interactions is trying to make connections, missing laughably by a country mile.
I don’t want to paint too bleak a picture. I’ve learned to be a better employee and handle changes. I’ve been able to control my emotions, making meltdowns less common. And while they aren’t as close as I would like them, I do have friends. But all of this had to come from lots and lots of hard work. What might seem easy for others is a challenge for me. They aren’t insurmountable, but they are still challenges.
I’ve seen friends that seem to just make friendships with ease. I’m always a bit envious of them, because I am not that smooth and it seems at times I do more to drive people away than keeping them close.
When it comes to changes in schedule, I’ve been better at handling them, but I can feel how unsettled I feel. It feels like everything is out of control; chaotic. My mind races thinking about how everything is out of sorts. But I’ve learned to be a good actor and not show my emotions ( or meltdowns).
What I’m trying to get at here is that being high functioning or mildly autistic doesn’t mean that life is easy. It’s just different. The challenge for me is how to live in a world that seems so different than me.
And that has challenges all of its own.
*The title of the blog post is a take on the quote on Ginger Rogers, the one where she does everything her dancing partner Fred Astaire did, but backwards and in high heels. For me, walking backwards with a backpack of bricks describes what it is like for me to be high functioning in a world where you still don’t fit.
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.
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’m a little wary about writing this.
The reason for my skittishness is that I don’t want my frustrations to be misunderstood. But I think I need to try to find someway to share these frustrations; otherwise they will eat me alive.
Anyone that knows me knows that I am a bit focused on new churches. I’ve really wanted to see new Disciples of Christ churches in Minnesota reaching various populations. Last year, there seemed to be some passing interest with a few people, but in the end none of the people who expressed interest were that passionate to do anything.
What has also frustrated me is the lack on interest in new churches. For reasons that allude me, Disciples clergy and lay alike don’t seem to be rushing to find ways to plant new communities.
One thing you need to know about someone like me who has autism (and maybe ADHD as well). When we believe in something, we are all in. There is no half steps, no casual participants. This belief is hard to let go. It’s like trying to stop a freight train, it just ain’t gonna happen.
If I were in a church and saw someone like that, I would have a talk with them They would be the best workers because they believe this. Really, really, believe this. But I think most churches and middle judicatories don’t know how to deal with someone like me.
It was the crazy speeding train passion that led me to start a church 10 years ago. I still had a lot to learn and I made mistakes, but I felt I was able to find a place to channel my obsession. Community of Grace never worked out and it was closed a few years later, but it was a fun ride.
I don’t know if I want to do that again, partially because I have a church to worry about and partly because I lack the people skills needed.
But I still want to see new churches. What is frustrating is that it seems like no one else in my denomination here in Minnesota is interested.
I know that starting new churches is not everyone’s cup of tea. I know there are other things that mainline churches are involved in such as social justice issues. I know that most people aren’t this obsessed about this issue. I know that my passion/obsession has pissed people off in my denomination (and for that I’m sorry).
I wish I could just be able to push this aside. But this desire isn’t something I can switch off, as much as I would like it to.
I don’t think I can plant another church, at least at this time. But I do want to help others (if there are others). I do want to spread the word on this.
This post is not supposed to be a bitchfest. It is showing how sometimes my autism and church life collide. It’s hard to have a desire or calling, and be told no.
I have no idea if this blog makes any sense. Maybe I have to learn as hard as it is to do, that sometimes your passions have to be set aside.
I guess that makes sense, but it is hard to accept.
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.
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.