Spoons Theory/Splines Theory — Today’s observations

As some of you know there is a theory about living with disabilities called Spoon Theory, and maybe even Splines Theory.  Today in the shower I was going through my shower stuff, and was also thinking about working and what I would do today.

I had been washing my hair, and I was thinking along, and then was “do I condition my hair today?” and I realized that was something that I had to actually think about and it wasn’t even “does it need it” thinking.  Because a lot of the time it seems like it is mostly that.

I was going to do it, but then I started to think about whether it was better to not condition my hair, or better to not condition my hair.

If I conditioned my hair, it would be easier to comb my hair after the shower.  This means it’s not just a matter of whether or not I have the energy, or spoons.  It’s about how that might lead to future efforts, and whether or not it will reduce “spoon expenditure” or increase it.

In this case, I did end up with saying that it was OK with doing it.  It may well have helped, I don’t really know.

The thing that I think about this is there is an interaction between the two theories.  When your lack (or probable future lack) of spoons gets you to be starting to think about spoons, there is a bit of “splines realignment” that also has to go into play.  With all of the disabilities that I have (Fibromyalgia, Chronic Fatigue Syndrome/ME, Autism, Complex Post Traumatic Stress Disorder, chronic pain, etcetera) it means that often there are a lot of different things going on at the same time.

I felt that I probably had a lot more to say about this.  I was coming to sit down to do a bit of work when I noticed that someone had asked me a question on the Feedback room on matrix.org, and it had to do with Open Psychology stuff, which meant that I felt that answering the question really was actually “doing work”.  Though I didn’t want to start with streaming that stuff, I felt that a lot of it had to do with stuff which was related to what this stream is supposed to be me working on.

There was a post on Medium which was talking about “20 things to know about kids with autism“.  The title alone is enough of a trigger for many autistics.  I am autistic, I am not a “person with autism” as I have said (I think) before, and hope to write more about in the near future.

I was commenting about the question of what it is (mostly it is “it is an allistic person talking about autism, but more talking about what it is like to be an allistic person who is a caregiver of an autistic person.”) though there are a number of other specific things which are mentioned there that are far more subtle, starting with something as simple as, “diet” and my response being, “Yes diet can be very important, but I do not know of any evidence that any specific diet is helpful in a broad way, rather that paying attention to diet can be very important, and this promotes a specific diet.”

Another point is the (I’ve heard it far too often) “use your words” encouragement to “communicate”.  In the two cases I have seen (different people, different situations) this has been when very clear communication is being given (by people who are able normally to use words) which is very strong in the non-verbal communication.

It is clear to me (as an outside observer) that the child is saying what they want.  Why they want it.  And what need they feel it will fulfill.    They are using near perfect “non-violent communication” though not through the use of words.  It is highly unlikely in my mind that the parents (one I know was a parent, the other I don’t know details of) were unable to understand their child.

The fact is, non-verbally the parent has expressed that they do understand.  The child has actually read that the parent has understood.  The parent is failing to respond out of that understanding.  This is so confusing to me that the latest incident literally froze me.  I couldn’t move, I couldn’t respond, I couldn’t talk.  My “fight/flee/freeze” response to a fearful situation was triggered to such a strong level that I froze.

I eventually was able to move on, and not be in such a state of fear as to not be able to respond in basic ways.  But in the end it took me several months (and a dog) to be able to return to that location without an intense level of fear being triggered.  The same incident didn’t happen again there when I did return, but to make it non-triggering it took multiple tries before getting the dog to even be able to approach the same location, then to be able to be there, and have only intense fear, but be able to “be there” took a good while longer.  Then after we got the dog, it took several months (I think) before I could be there without a noticeable fear response.

There have since been other cases where I have been triggered by similar type behaviour of adults regarding I believe the same child, who seems to live in the area.  With the dog, I manage to not freeze in response to this, and am able to get her to return me to home.  She has been incredibly helpful.

Another topic that came up was a study which I recently read (and believe was published in the past 18 months) which used very simple animations.  I asked about the study on Plurk and have been getting some response to it.  I remember reading, or at least going through quickly the study in the entirety, and it went into a fair amount of detail about how they interpreted the data they collected.  There is someone who mentioned a specific study which the animations sound very similar to that of the study, but that was done in 1944 and I haven’t found (through her) a good indicator as to whether that is the same or not.

I also ended up talking about a video about Tony Attwood done by The Austrailian Broadcasting Video, which the title of the version I saw, was that it was talking about autism, and whether it is the next evolution of the mind.

The video clearly is about Tony Attwood.  The title I saw may have been misleading in that I’m not sure if it is from ABC or not (it is, but it is misleading as to content).  The video is about him, not about Autism.  It was originally produced as a documentary about him, and he is “the leading expert on Apserger’s Syndrome”.  In the first 2 minutes of the video, there is an “meeting” with him, and a young girl which contained 5 shots of her feet and how they were clearly “very active” and any shots which had other people’s feet in it were presented with them nice and “quiet” and simply sitting there, if not “flat on the ground” not moving.  There even were closeup pictures of her feet to make it clear this was important.

This others her.  In fact even though her dialogue is normal, it seems that almost every clip which shows her makes a point of showing how “other” she is with her body language.  This is helpful in trying to understand autism, and why autism is seen as so “other” by so many people.  But this isn’t a video with looking at that aspect, and certainly not the the degree that I believe it really should.

I could easily take the first 2 minutes of video and possibly even produce a whole hour responding to it.  I believe that would be a useful exercise for someone to do about how this video was presented.

I believe I also ended up going into a number of other points and specifically how it is that we can produce a shift for people with autism, though I don’t believe that the best approaches are autism specific, but apply to all forms of oppression.

This has been a more flow of mind type piece than I had hoped it would be.  I am going to end it here.  It is good to get back to work.  And to be able to write.  There are a few other topics that I would really like to address, but I think that in terms of useful expenditure of my time, I have reached the limit in terms of actually writing right now.

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