Neurospicy characteristics

Autism and ADHD are not just one set of characteristics, but it is a spectrum of a variety of characteristics. Each autistic person has a different set of these general characteristics, and they are each applied uniquely to each autistic person. So you can't just find a "definition" of autism and apply it to yourself to see if you fit or not. 

For instance, a common characteristic of an autistic or ADHD person is "stims" or repeated actions that we do in order to balance our overwhelming energies. But each autistic person has a different stim or set of stims we use.  Stereotypically, an autistic person might flap their hands, bounce their torso, or pace manically.  My stims are that I bounce my leg, pace when talking, fingerspell (sign language) words I see or randomly think of, or sing aloud.  All of these can calm me down and get me ready for another activity.

The fingerspelling, especially, is rare as a stim. Very few people do that, but when we think of it as a form of echolalia (repeating a word one hears or thinks of), then it is not uncommon among autistic folks, it's just that my version is quieter.  Singing is pretty rare, but humming is pretty common..

Another thing about stims is that we can sometimes exchange one stim for another.  For instance, I will scratch my leg, often until I'm bleeding.  That is not a positive stim.  But I found that there is a group of "toys" called fidget toys that are made especially for "pain stims".  A "pain stim" is when we are so agitated that we need pain to break us out of the funk we are in.  I got a "cutie pie" fidget toy, which is a cylinder for one's palm and it has sharp, scratchy surface so I can have pain stim need be "scratched" so to speak, if I roll it in my hands. That's not for everyone, but it works for me.

Stimming is just one characteristic on the neurodivergent spectrum, and you see how complicated it is?  So there are a number of other characteristics.  Some examples: 

Inability to be "socially acceptable"
For example, I have a struggle answering the basic question "how are you?"  I overthink it and can't decide what they want to hear without me needing to lie. "Fine" is a lie, by the way. 

Difficulty communicating
I have periods of time in which I will have difficulty talking or initiating conversation.

Hyper- or hypo activity
I will have times, sometimes months, in which any activity is difficult to do without a meltdown.

Sleep difficulties
I will often wake up in the middle of the night, unable to sleep for an hour or two.

BM or urination problems
I feel that I need to go to the bathroom, but I cannot release my waste (this is usually due to anxiety)

Depression/anxiety
I have constant depression, daily.  I have frequent anxiety but for years I denied it.

Seeking dopamine raising activities
I would volunteer for difficult activities, without fear or dread. 

Hyperfixation on a subject that could last weeks or almost all of one's life
As soon as I heard about Jesus (before I was a Christian), I would seek more and more information about this person. On the other hand, I went through a number of months where I needed to find out information about the cartoon Steven Universe.

Inattention on what is "important" or hyperfocus on what is "unimportant"
If I am having an important conversation in a living room, it is difficult for me to not pay closer attention to the books on a shelf than the conversation I am supposed to have.

Meltdowns or shutdowns
I can get so emotionally distraught that I can't talk or have to walk away or I will get very upset and start yelling.

Executive dysfunction
I need to make a phone call but I can't bring myself to do it.  That part of my brain just isn't accessible.

Any one of these characteristics any "normal" person (neurotypical) can have.  An autistic/ADHD person will have many of them (probably not all) and they are continuously a hindrance to achieving personal goals or in having relationships with others. And when one experiences these over a long period of time without a sufficient break, then comes burnout.  Personally, for the last few years, I've been in perpetual burnout.

I don't say this for people to have pity on me or other autistic/ADHD folks.  Just so that we can understand each other and give each other space when necessary. 

Aw, DHD

 

https://ablelight.org/blog/why-the-autism-wheel-is-replacing-the-spectrum/

It seems that everyone is getting diagnosed with some sort of neurodivergence.  Quite a fashionable trend. All the cool kids are getting a diagnosis.

Yeah, not really.  But I did.  And so did my family.

My daughter got identified as autistic in 2014. 

My son got diagnosed as autistic in 2015.

We were then told that it is heredity, from the male genetic side.  So I tested myself with one of the online tests.  Didn't seem to be right for me.

A few years ago, I was officially diagnosed with AuDHD-- both autism and ADHD.

My other daughter this year was diagnosed with ADHD, with a likelihood of autism.

And my wife, who isn't diagnosed with anything, and won't talk to a therapist,  is likely some form of neurodivergent. 

Yep, we hit the jackpot. And now that my son is living with us again, here we are, all together, living in Eugene in one house together. 

Frankly, that's how it should be because at least we all understand our weaknesses and we won't attack each other for not having normal capacity.

I'll talk more about this, but for now, know that a family of neurodivergent folks is expensive.

My one daughter insists upon having Starbucks daily because it is a part of their routine. If they don't get Starbucks, they will cry.  I don't like crying.  So they get Starbucks, even when they don't have a job, like now.

My other daughter has a very strict eating routine which doesn't usually include meat, but they recently found that they can eat meat made in a sous vide style (which involves slow cooking bagged meat in water?).  I'm glad they have broadened their eating, but the cuts are kinda pricey.  And when meat goes bad because they don't have energy to cook, then that's really pricey.

It used to be that my son couldn't do dishes or bring dishes to the kitchen.  After a few years of living with his friends, though, dishes became a  thing he could do. He's not quick about doing them, but he does them.  

Neurodivergence isn't necessarily a disability.  It is a different way of processing one's environment and social order that most people don't have.  It IS a disability when it processes the world in such a way that other people do not recognize that process.  Such as oversensitivity.  A main characteristic of neurodivergent folks is that they are very sensitive to certain everyday sensory features.  Some of mine is flickering lights (like all fluorescent bulbs), loud sudden noises,  a person standing too close to me, loud background noises, and different voices talking at the same time. Add those together and one of the most difficult situations for me is going to a grocery store that has all these sensory sensitivities all wrapped in one.

That doesn't mean I don't go to the store.  I do, quite frequently.  And it is unusual for me to have a shutdown (no talking/contact) or a meltdown (running away/throwing a fit) in a grocery store.  It has happened on occasion.  But the real issue is after the stress period is over and THEN I will have a shutdown or meltdown.  If I purpose to have a shutdown (stay away from people who might talk to me), then I can recover.  Eventually.  And that is an example of autistic burnout.

When I go to the store and I am very stressed, but don't show it, that is called masking.  And masking always leads to burnout.

And I will have to talk about that more another day.  This page is full. 

Hi, This is Steve Kimes, Anawim, Esq.

 I know it's been a while.  I've done a lot.  I know you've been through a lot in the last few years.  

The last post was in 2019, and my last series of posts was in 2017.  For most of us, that was a different era, a different life.  In 2025, things might look much darker for you.  I know they do for me. But I have more hope in some areas as well.

Just as an update, I want to give an outline of personal changes:

My covid fashion

-My movie watching has gone WAY down.

-However, I've been listening to a lot more albums.  I've written about 250 reviews of albums in the last ten months, most of albums I have heard for the first time most from the book 1001 Albums You Must Hear Before You Die. 

-I have been diagnosed with full blown Diabetes, ADHD, and Autism.

In light of that, I have done a lot of study on Autism and ADHD and AuDHD (because the combination of the two neural types is unique from either).

I've had three therapists.  The first one I saw face to face. That wasn't working.  The second one I gave a few weeks.  Then I asked for a therapist who won't pull punches and will just give it to be straight (this was before the TV show Shrinking). So they recommended another one.  She's been great. I've never seen her face and I like it that way.

Did I tell you I moved to Eugene, OR?  My family and I packed up and moved south permanently.  I'm pastor of Eugene Mennonite Church, a congregation that loves to sing but doesn't trust pretty much any theology.  They've been burned by Evangelicalism. I get that.

If there was any doubt, I am 100 percent supportive of  LGBTQ+.  And refugees.  And immigrants. And Palestine. I don't care for Trump one bit.  And I'm pretty unhappy with the Democrats. 

I don't know if I will be posting. more here.  I probably will, I have a lot of writing that hasn't been published.  I tried to set up a website and I have failed many times.  I can do Blogger.  I think that's my limit.  

Anyway, hope we can visit again.

Steps over the last year

For those who read earlier "diary" posts, I realize that the last post seemed to indicate that I haven't changed much, that I am still in the throes of depression.

At the present moment, I find that I have grown a lot.  I am not nearly as depressed or anxious as I was a year ago, and I'm certainly much better than a few years ago.  I no longer have thoughts desiring my death, or a focus on the events that closed my work among the houseless.  I had to go through a severe grieving process, as I spoke about in a previous post, and I'm better.  I'll never be 100 percent, I think, but I feel normal, whatever that is.

I am now one foot in Eugene, Oregon, pastoring a small church there, and one foot in Portland, trying to close out my work there, while leaving a legacy.   Eugene Mennonite Church is where I'm pastoring and you can see what we are doing there on our website, www.eugenemennonite.com (not .org-- that one is old!).  We are hoping to grow the church in the next couple years.

In Portland, I am working to establish Village of Hope.  We don't have a website yet, but we hope to soon. A year ago, we established a village on public land in Portland, which the city took away immediately.  I spent three months working on that project exclusively, which drained me completely.  I find myself giving to that project again, to get it started in a different place.

In the meantime, I am being sued for helping homeless folks and threatened to be billed by the City of Portland.  All this is emotionally exhausting, but it has not halted my progress to positive mental health.

Now I find myself on the edge of moving to Eugene and wondering what I will do next.  I am a part time pastor, with time to do other work.  I want to work with the houseless in Eugene, but I want to make sure that I am doing something necessary, not just helping where people don't need help.  I am learning to be slow and patient, like I was before I started.

Honestly, I feel a lot like I did twenty five years ago-- ready for new projects, listening, wondering what opportunities will present themselves or that I should create.  I am also a lot more tired than 25 years ago, a bit more cautious.  I want to spend more time with my family to see my children progress into adulthood and independence.   I am looking forward to what we have in store.

Fear Accumulated

I entered into my work with houseless folks fearless.  I suppose not completely, but I was ready to face threats, beatings, hatreds and even death.  I had considered all the circumstances and so I was ready to face them.  This was in line with Jesus' preparations for his followers about persecution.  "They will hate you," he intoned, so readying us for all kinds of hatred.  Hatred from those in authority over us.  Hatred from our fellow religionists.  Hatred from those whom we serve.   So I rehearsed all of these possibilities in my head, so when they came I would be ready.

And I was ready. When someone called me Satan for my firm pacifism, I laughed and shared with others.  When someone threatened to punch me in the middle of a sermon, I talked him down from it.  When someone punched me in my house, I was shaken, but thoughtful.  When a neighbor threatened to kill me and my fellow pastor, I was careful, but shrugged it off.  When local police told the neighbors I was high on meth and selling it to my people, I thought it was hilarious.  When someone snapped and threw a TV at me because I was trying to help them, I shrugged it off.  When another person lurched at me and threatened to kill me, right then, right there, I was concerned for the others watching more than I.  And when someone struck me at the church because I had to escort them off the property, I barely flinched and said, "Are you done?  Let's go."  When I was arrested in city hall, I had a wonderful time.

I knew my principles and I was ready to stand and take whatever for them.  It looked like I was fearless, but that wasn't really true.  I recognize now that I was afraid each of those times, but each incident had so little fear that I didn't worry about it at all.

But as I am older, I realize that these incidents and others accumulate.  They remain in my gut, stewing, distilling, until there is just a vague fear that comes out in weird circumstances.  I withdraw, instead of stepping out, and each time that I take a step into new circumstance, I am surprised at what I am fearful of.  It is like learning what my kryptonite is, because I never knew it before.

I am scared of middle class people, of their hidden judgments and powers.  The fact that they can use politics and courts and police to force their will upon me.  I am afraid of losing all the supports I have for my family-- the boundaries I put around them and the wealth I use to keep them safe and growing.  I afraid of large, angry men.  But mostly I am afraid that I lack the charisma and social power I used to have to make people do what the ought.  I had greater confidence in my psychic power than I did in God's power to step in and help.  Frankly, just look at the classic stories.  God didn't always help.  He let people suffer and die all the time.  So the Bible was never a confidence-booster.

I am still doing things others wouldn't.  I appreciate houseless folk more than I ever did.  I talked one guy to explore with me in my car for an afternoon and he showed me local camps.  But you see, he has way more to fear from me than I do from him.  I need to make it worth his while, to be a good listening ear, to give him some money for his time.  To bolster his confidence that I'm not the kind of guy afraid of him.

Roosevelt was right: We need only fear fear.  Not so much fear in ourselves, but fear in others.  When others are afraid that you are going to take the very things they have rested their security on, that's when you need to fear.  We do not fear our fear, but the fear of others.

But I am afraid of my fear.  I am afraid of the weakness it presents.  The fact that my fear could overcome my compassion and limit my actions.  I am afraid that I will fear the next large man I come across, that he might throw a TV at me.  That I might not take a radical action because a government official might take away my family's house.  I'm setting up protections against that.  But still.

I still don't mind getting arrested.  Looking forward to my next opportunity.

Disciplines

The daily disciplines I must do in order to get out of depression and to be ready for a new life.

Liturgical prayer: Shema, Lord's Prayer, Hymn of praises to our God

Time of silence, start with 5 minutes

Prayer for enemies, prayer for needy

Read a book for at least 15 minutes

Write a blog post (whatever length)

Study the gospels


Do this (except for study) before getting on other internet sites!

7-12-17-- Causes

Reading my post from yesterday makes it seem as if my needle had not moved in months.  I am just as depressed as before and saying the same stuff.

Not really.  For one, we moved out of the property that I worked at off and on for twenty years.  That is an important step and quite possibly essential for me to progress out of my depression.  As long as my organization was there, I still felt responsibility for what they did, and it lingered in my mind.

I feel as if I were carrying many different boulders of responsibility over the years. I have my house, my family, bills to pay, teaching and writing.  One of the biggest ones was the property and the management there, both the continuing work that needed to be done as well as the result of the decisions I made.  This week, taking the rest of our property off of the land, I can wash my hands of the whole thing and it is no longer my responsibility.  What happens there or doesn't is no longer mine.  We have paid what we needed to pay and we have fulfilled all that we said we would do.  We even met our long term policy, "Leave a location better than you came to it."  What happens to Red Barn/Sanctuary now is out of our hands.

I should feel freed, but I don't really. I have a job now which I can leave and not have to think about at home.  I am paying off the bills more consistently than I have for decades.  My family is (mostly) doing quite well.  So why don't I feel better?

A couple things.

First, losing the Red Barn is losing what I poured my life into, somewhat for twenty years, but especially the last six.  It was all-consuming, and it was the purpose of my life.  I did what I needed to for my house and family in between times of supporting that work.  It was overbearing and eventually I saw that no one could hold onto all the pieces, but still, it was my baby.  To give that up is like losing a parent, losing a spouse.  My depression makes sense because I am grieving a loss.  A loss other people can't feel or perhaps understand, but it's still there.  This is why I am going back and forth between sadness and anger, it's all a part of the grieving process.  I need to acknowledge the loss and take the chances I can to move on.

Second, I have lost a way of life.  My wife and others pointed out that I dove in too far, swam too deep in trying to help homeless folk along with many others.  I need to slow down and take care of myself.  However, I organized my life to be a helper and support to those in the greatest need.  I arranged systems so that I could overcome my deep social anxiety to connect with and support those in need.  Now I am at sea.  Without the structure and support inherent in the system I created, I don't know what to do.  The inability to have a place to help people paralyzes me.  I have a smaller system of food distribution that I am running, but the benefit of this system is seeming less important.  I don't know if this is the positive work I'd like it to be.

I feel as if the motivation and drive of my life is missing.  Animals have instinctive work they do and they accomplish it without thinking.  Humans need to have a system which they are a part of to establish motivation.  An entrepreneur like me, who loses the business that is their life, leaves a void.  What is the reason for getting up out of bed?  I'll do what I must, but beyond that, what's the point?

Pretty existential questions, but depression forces one to confront them.

If God would tell me, "do this" then I'd have my next action.  But to command "rest" is to leave me adrift and unmotivated.

I must motivate myself.  I must find something to do with my time and focus on that.  So I will focus on writing.  I have a theology of Jesus I want to write and essays about my experiences with the homeless.   For now, that will have to do.  I hope to have a more focused motivation or another system to plug myself into.  In the meantime, I need to do something.

7/11/17-- Post Service Blues

Please forgive me.

I am in dire need of a therapist, and I can't get one for now, so I am continuing to use this blog as my sessions.  There will be much whininess ahead, just as there was back before.

It's been a while since I posted.  I've been focused on my new job (cleaning offices), and a Bible study and getting my family adjusted.  Now that we are all settled into our next stage (for a year or so until we go through it again), I am feeling what I'm feeling again. And, damn, if I'm not depressed again.

Typical stuff: anger, self-pity, wanting to isolate, sadness, lack of motivation.  I've got plenty of stuff to do, but I just don't care enough to apply myself.  Occasional thoughts of suicide, but not as frequently as last year, and I have no fear that I'll be motivated to act on it. I am surprised that my wife is taking such a stand-off approach to me.  Perhaps because she doesn't really know what to say, or doesn't realize the depth of my angst.  

My main fear last year in shutting down the day shelters and all is people's suffering.  Right now, my greatest realization is how little anyone actually needs me.  There are sufficient volunteers and outlets that frankly, I could walk away and no one would notice.  I am desperate to help, because I need it to give me some joy in my life, but half the time when I offer I'm told to never mind.  They got it covered.  I'm glad that my prayers and work for many years has put up so many people wanting to do this work that I felt so lonely in.  But I now feel like I'm on the outside looking in.

I wonder if I would feel better getting a job in the field.  Work for Sisters of the Road, or something.  But I know that my demands of what is good and right would end up conflicting with whoever I would work for.  I am quite narrow-minded.  

I have two temptations: one is to just quit everything and walk from camp to camp, praying for people and listening to folks, using the resources I have to try to help them.  The other is to just walk away from it all, quit my social media and not have anything to do with any of it.  Of course I will lean toward extreme reactions.  That's my nature.

Like I said, a bunch of whining.  I can't imagine this is interesting to read.  Maybe my next list will be those who I am angry at.  That would be fascinating, I'm sure.