Star Ford

Essays on lots of things since 1989.

Compact thoughts on autism 2009-2010

on 2010 October 14

The following 13 sections are emails on various autism-related topics.

on reverse semantic dogma

2009 December

Responding to:

<<I have been a bit confused with “Autistic Supremacy” references.>>

This strikes a chord with me because of several other instances of this concept – “socialism” being a widespread current example. “Sprawl” is also a huge one (people write about it but then criticize you if you ask them to define it!). “Neurodiversity” is like a reverse semantic dogma word, in the sense that it seems clearly defined to me (variation in neurological structure or function), but some people say they don’t “believe” in it; I suspect they mean they don’t believe in what they believe people extrapolate from the word, or something.

But getting back to autistic supremacy: maybe the problem we have understanding terms like this is that supremacy in any form is a concept that is purely socially constructed, and therefore tends to be invisible to autistics. Extreme NTs seem to see the world in terms of a constant battle between groups defined by color, sex, etc., and words are the weapons. So perhaps just by waging a war of words, they perceive the cosmic balance between the groups as shifting. Or maybe it also involves wanting to have more power and wealth. Actually the more I think about it, the less sense it makes.

on my theater class

2010 April

A. – Your comments prompted me to write my story of my theater class (which I may have written about, sorry if I’m repeating). It was a class for autistics, with “peer” mentors (peer = NT), and all the mentors and the director were nice and all, but some things really stood out:

1. One of the social rules was not to mention autism or ever separate out autistics from others overtly, although it was assumed to be ok when the class split into groups, that the autistics were divided evenly among groups. I was hoping to work with autism as a topic for the performance, but that became quite obviously forbidden. It was using the power of pretending to get over the we/they attitude.

2. Many of the other auties had been through the system and seemed to have been trained with social skills, or at least their behavior had been more normalized than mine.

3. Many of them spend a lot of time going through special programs for autistic people – kind of “mental health consumers”.

4. Every activity was so strongly structured that one could never ask or answer an open ended question throughout the entire 2 months of classes. It was like living in multiple-choice-land.

I’m still confused as to what they were trying to achieve – perhaps a temporary fake world where autistics could co-exist with others on equal terms? But with equality being managed by going to the lowest common denominator? Hmm.

on homeschooling

2010 June

My belief in homeschooling is best stated by Ivan Illich (“Deschooling Society”) and underscored by my frequent ability to detect homeschooled youth by their aura – something about them is so intact and shining brightly, that I have often been able to sense the difference very quickly.

It’s a constant mourning to see the spiritual destruction of centralized institutions. It makes me numb; I feel I want to be mourning more actively for that and for the fish in the Gulf of Mexico but I find my feelings checking out under the relentless weight of the artificialization and killing of everything.

on social responses to crime

2010 July

I’ve noticed that the way people talk about a murder depends very much on the way it was done and what is believed about who the people are. If the victim is shot, the response seems to be to get revenge on the killer; it seems to inspire the competitive sports part of people’s brains. But if the victim is raped and dismembered, the response is to use the word SICK in capital letters a lot, as if it becomes more true the louder you type it. There’s a lot of subspecies of “guilt” out there, all of which are social constructs that involve the person doing the judging in some way.

on self-advocacy

2010 August

I went to a retreat last weekend, for people with developmental disabilities, not those with acquired disabilities. I have very little experience with this. The main thing that struck me was that among that population, there is a 2-tier society in which caregivers are in control like parents. So, it sort of felt like we were being herded around and asked to “help out” but not given any information or tools with which to help. It was possibly assumed that we could offer nothing substantive to the program. Everyone was nice, and there was no lack of respect, but there seemed to be an assumption that disabled people couldn’t make even the tiniest decision, and that normal people automatically could decide everything.

One fellow who apparently did not have the use of arms or legs was recruited to “help” with making sandwiches. Of course he can’t make sandwiches. Duh. But somehow part of this 2-tier culture demands that everyone ignore the disability and put on this ridiculous show of Good Job, Thanks for “Helping”! So they put the sandwich tray on the arms of his wheelchair and pushed him to the other room and then put the tray on the table. [I found out later that he had requested this, and that the decision was not made by the non-disabled helpers. Also, this email was viewed as very offensive by some, who felt that disabled people did decide things in general, and the way it appeared to me was incorrect.]

Now, if someone is delayed and they are like a 3 year old in many respects, then I can see how it is appropriate to let them help because the child is learning, and will eventually be able to help substantially, even if the help now is just a token amount. But if your disability is physical and not cognitive, then who is all the “helping” helping? I don’t get that.

Autistics don’t necessarily have either cognitive or physical disabilities (some do, but that’s not autism). So it also struck me that autism may be very different than everything else in its culture and expectations. Certainly the numbers of caregivers required for day to day life for people with other disabilities is much more, and that makes it different.

If you really want your brain to turn to applesauce, think about this one: “I’m teaching you to be a self-advocate”. People are born as self advocates. (“Give me milk.”) If society takes that away, can society also give that back? Why would they? It’s just creepy.

on reactions to me

2010 August

One of my issues is that I often say stuff that appears to be the plain truth to me, and people have one of the following reactions: become enraged; launch an attack; become guarded and watchful; laugh uncontrollably. They’re constantly inventing some kind of complex explanation for why I do things, such as: I’m trying to gain power; I’m trying to demoralize someone or ruin their reputation; I’m drawing attention to myself; I’m planning a crime spree; and so on. I usually cannot communicate intentions well or at all.

These explanations of theirs come out of their brains, because of how THEY think and see the world.

Bottom line: Other people do stuff because of who THEY are, not because of who YOU are.

Hugs and sparkly things for all!

on conflict between autistics

2010 September

To the extent that language structures thought (maybe not so much for some autistics), having a vocabulary and language to discuss the deeper reality of human experience will help us discuss and work through conflict. I occasionally see that people are the “walking wounded”; when they do “mean” things, I’m occasionally able to see them as woefully incomplete like myself, and have compassion, and the meanness just flows by without hitting me. If I really think of it in real time, sometimes I can see them as carrying heavy burdens, whether that is abuse from their past or just operating on incorrect information, or even a spiritual burden that no one can explain. We are not really on “sides” of an issue; we are all just partially blind. No one really “IS” any of the judgments we lay on them. We have our burdens and our incompleteness, and yet we have our strengths; by some miracle, accepting the limitations and carrying the weight without attempting a false escape is what gives us strength and develops gifts.

Our whole education and mental “health” systems are founded on a notion that behavior is paramount. Not truth, or virtue, but behavior. No wonder we can’t get along, when we are exposed to that deathly numbing dehumanizing force.

The rest of the world needs us. We can be organized and compassionate. We can solve bigger problems. I’m not just being dramatic.

on bullying and empathy

2010 September

Some people who interact with me seem to lose their grounding of basic respect over time and develop twisted emotional problems or a gridlocked conflict over the thing about which I’m involved in. It is very like my presence reflects something about them back at them that is so disturbing that they can’t verbalize it, and this corrupts them to the point where their behavior is reprehensible by their own prior standards. And I don’t even have to do anything to cause this.

Empathy is a multifaceted term. Perhaps we have animal empathy but not cultural empathy. I receive and understand what people are feeling, but I don’t absorb the beliefs that they associate with the feelings. What they might expect is for me to either declare myself as a friend (believes the same thing) or enemy (believes the opposite), but I won’t. This seems to be what eats away at them.

If a person is trying to establish a power relationship through force of words, and they can’t do that with us (because we haven’t absorbed the same cultural assumptions about the necessity of rank-inequality in relationships), then they may feel especially powerless and revert to more overt bullying.

on dealing with worry

2010 September

We are given survival skills of (1) instinct, (2) love, and (3) thinking ahead, which each can get out of balance. If you think back to primal memories, you can see how these three skills can keep you and your tribe safe. Instinct (taking immediate action) is needed to protect from the immediate threat; but when out of balance leads to residual aggression, or failure to act. Love holds the tribe together; but when out of balance leads to abandonment or over-favoritism / judgment. Thinking ahead allow the tribe to survive the next winter or flood, stock up food and so on; but when out of balance leads to being unprotected or overprotected (incapacitated by fear).

Your worry could be the meds magnifying errors in thinking about future threats. Threats are one of three things: too small to worry about, too big to do anything about, or the size that requires thinking and protecting yourself from. One technique that might work is to practice facing different types of small threats and either not preparing for them or doing something to prepare for them, and see how bad they really are. That way you might train your brain to (a) categorize them correctly, and (b) actually take precautions and do the effective thinking ahead for those threats that you can influence. If you categorize well and take meaningful precautions well, I believe you will become less obsessed with the problem of not being able to prevent dangers that are actually outside your control.

on educational changes

2010 September

My thoughts on school “then and now” – things that have changed over the last 30 years and things that haven’t:

1. School is a lot less dangerous now. 30 years ago boys brought knives to school regularly, no one watched where you went before/after school, no one patrolled the playgrounds. Now they take bullying much more seriously.

2. Special needs are less stigmatized now. 30 years ago the special ed class was a tiny fraction of students and labels and meds were secrets; now lots of people are getting labels, and kids talk about labels and meds openly. Certain labels appear to have lost nearly all stigma: learning disability, ADD/ADHD for example.

3. The foundational theory of education hasn’t changed: children are a lump of clay to be molded into obedient workers.

4. The education machine is a lot more “effective” now than 30 years ago. This is a double edged sword:

4a. If you are a child of deadbeat parents, the school is more effective at parenting: they will find out what you need, provide referrals, social work services, ersatz parenting. You are not as condemned to the limitations of your parents as before.

4b. If you don’t fit the norm, they will normalize you more strongly than before. In a more military fashion, they will pry into your life and break you down and “fix” you.

In summary, the danger of going to school now is not so much being beaten up and socially traumatized; the danger is that the system will be effective and you will forget that you were once a spiritual being with a higher purpose.

on the R word

2010 September

I have friend who wants to banish the r-word and the a-word from the language (the a-word is autistic). My first thought when I heard this, was “what’s wrong with being autistic?” My second thought was “Why did i have that first thought?” meaning why did I instantly assume there *is* something wrong with being “retarded” as opposed to “autistic”. I don’t know. Should the a-word be banished too?

The movement to “ban” words backfires when people use some other word to mean the same thing. So the argument that we shouldn’t just blindly apply PC language to avoid guilt has a lot of merit.

Jokes using ‘retard’ only work because many people share an understanding of a socially constructed group of people who are defined and limited by a label. Whether a person’s speech is a joke or not, and even if they substitute some other synonym for ‘retard’, they can still communicate beliefs about that made-up group. Consequently, going after the specific vocabulary or mode of speech isn’t really the point. The point to me is to go after the belief that people are pinned to discrete groups that have intrinsic ranking. Jokes convey this belief just as much as other modes of speech.

To me it seems like an NT thing that thought imbues words with the power to hurt and repair feelings, and to define rank and group membership. So, stamping out the words apparently works as a proxy for stamping out the beliefs, at least for them. I’m kinda verbal but it’s hard for me to get offended by vocabulary… I probably think in a very different way.

on teaching young children

2010 October

Thoughts on a presentation I attended:

* She used this scenario to show a difference between autistic and typical 3-year olds: A group of children go into a room with a pile of wrapped presents in it. The typical children will squeal and unwrap and fight over the contents. The autistic children will have a much wider range of reactions: ignore them, stack them, etc. She used this as a way to explain that autistic children “don’t know how to learn”. That didn’t seem right to me; it seems that the range of reactions is wider because conformity is not built-in.

* She says “teaching your colors” can take a long time, for example “teaching red” could take a year, to an autistic child. This was one of the more wild statements made, and it got me wondering what teaching “red” is, or teaching any adjective for that matter. I suspect teaching red means to get a child to have the same set of associations and reactions to red that the teacher has. I don’t know why teaching red is so important.

* And finally, my brain is still very confused about “teaching self-determination skills”. It feels strange or impossible, yet if it just had a different label I might be able to accept the concept. It feels like the needed action is “letting go of control” (gradually) and not “teaching”, but maybe when someone is 22 and has been treated like a 3 year old for 19 years, they need to be taught “self-determination”?? I was very independent as a teenager which is very different than a lot of auties today.

on blaming the hole in the bucket

2010 October

To me the answer to bullying is the same as the way we achieve peace in the world and develop justice political and economic systems. The key insight is that the people we often blame for being the bullies are just taking the path of least resistance. When there is a hole in a bucket, we don’t blame the water that got out; we realize the fault is in the bucket. Yet we build social systems with holes (perverse incentives) and then blame those who fall into those incentives. If it is possible to corner the market, or get a bailout from Congress, or control the food supply on an island, there is always someone who will do it. That someone didn’t necessarily start out bad but morals are flexible. If one person doesn’t take the bait, there is an endless supply of other people who will. No educational campaign will change competitive human nature. The best we can do is build a better bucket.

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