Sameness/ behaviours/interests - are they really a disorder?

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Yes. That's it. That's exactly what I meant.



That's actually a very good question, and I do have some thoughts about that. I'm not entirely positive if what I'm about to add is about "Sameness" though, but I think it is.

While I do think "Insistence on Sameness" is a big problem, I have developed certain strategies for dealing with it that work to some extent. Before I get into them though, I'd like to further clarify more about how I think of "Sameness."

I think there are two main aspects of "Sameness," both of which are alluded to in DSM-IV.

1) The strong need for predictable routines. Difficulty dealing with changes in routines.

2) Strong need for stable and unchanging environments. Difficulty dealing with major and often minor environmental changes.

One thing I've done, because I and by three boys all find it difficult to deal with sudden changes in expected routines, is to schedule them as far ahead of time as possible, and use repeated reminders as the change in events approaches. This puts a "seed" of expectation in our minds, so that after many repeated reminders, it's not surprise, but a "plan" and in effect at least in part of expected routine. Shopping trips, which we only do in a big way about once every four to six weeks, trips to visit family, and stuff like that.

Other things, like unexpected phone calls, we use things like caller ID and our answering machine to manage, and have accustomed ourselves to not answering the phone at all unless we feel prepared to talk to whoever is calling, depending on whether we know what it's probably about. Most of the time, we don't answer at all.

The thing is though, there are many things that cause change that we can't control, and we don't handle any of them well. That's pretty much why I'm convinced Insistence on Sameness is a real problem. Because there are so many things that cause change over which we have no control.

For example, during the past few years, there was a lot of construction around our apartment complex. It disrupted life completely. I'd wake up to grading machines, bucket loaders, bulldozers, and those damned vibrating things they use to pack the soil. The buildings shook incessantly every day. I dealt with all that by closing the doors, drawing the shades, and basically withdrawing during the entire process. That withdrawal caused further withdrawal from other things I needed to get done, like finding a job. I was under so much stress from that break away from Sameness it was affecting my commitment to basic obligations.

I'm not a child anymore and my kids aren't either so we don't see meltdowns and stuff like that anymore, but when I was young I had my fair share of them, and when my children were younger they had theirs too. Those meltdowns as young kids were extremely disruptive to our own psyches, to us as parents when my kids were still children, and to my parents. It was not only disruptive to them, but also to anyone else relying on them. I made my own parents late for work I can't remember how many times. My kids had the same effect on me.

Meltdowns, as children, is how we tried to "handle" the situations, but obviously it didn't work well. As we grew older, we learned some more effective methods, but even so there are still many situations that although we handle them differently, we don't handle them well at all.

It is for these reasons I do consider "Insistence on Sameness" to be a very real disability. A very real problem that has to be dealt with.



When it comes to Insistence on Sameness, I don't think we do need to debate over the definition, other than to clarify what the meaning really is. I do think how I've described what it means, is exactly what the APA or whoever came up with it, meant when they came up with it. If I'm right, and I think I am, I don't see how it could NOT be seen as a problem we need to deal with. For those of us who actually have the problem that is.

Crap. I hit submit instead of preview, but i suppose this part is best put in a separate post anyway.

Damn! I did it again! disregard this post. I'll put it in later.

MrXxx - everybody gets stressed by building work - sameness may contain a vision of a quality of life that has genuine elements of need combined in it. Those compactors may have been one of two things I can think of - pile drivers or what we call Whackers. Both produce deep vibrations no one likes. I have used whackers they are horrible to work with and the vibration from old models caused all kind sof circulation problems in the operatives. The old machines were very difficult to steer in tight circles and you could flatten a garden border of flowers if weren't careful So not only is the customer being driven crazy by deep seismic vibration , but when they look out of the window they see their garden being destroyed by some guy, maybe swearing his head off, who'd lost control of a machine and was hanging on trying to find the kill switch, which may have vibrated off at the crucial point.

Sameness in the customers' mind must involve getting the builders to leave a soon as possible
and getting back to what they consider normal ?

This is what I meant to post up there ^^^^^

Though I don't have a problem with Insistence on Sameness as it's described by professionals, or that it is a problem, I do have issues related to the other point you touched on:

Special Interests.

First, I have no problem with its inclusion in DSM. I do think it is, and should be one possible "symptom" of ASD's. I realize that calling it a "symptom" comes with some negative connotations. Symptom, I think to most people connotes a negative thing, like symptoms of diseases and disorders. It shouldn't though. There really is no logical reason to assume that a "symptom" is or has to be negative.

A little bit of digging into the current definition of Symptom, and it's etymology reveals something rather interesting. The word, like the word Autism, is rooted in Latin and ancient Greek. As we all should know, Latin is a dead language mostly used by the medical, legal and scientific communities, yet is also the root of many words used in everyday English. Symptom has been in use as an everyday word for so long it's shouldn't be surprising that it's meaning evolved over the centuries.

In its original meaning, Symptom simply meant something along the lines of "fall together, happen." It later evolved (around the fourteenth century) into a meaning closer to what we usually use it for today. "Sym," derives from "Syn" which meant "same," and is also the route of "Synthesis" and "Synergy."

Today, the number one definition one sees in dictionaries is related to disease and illness. But the number 2 definition is still pretty much the same as the original meaning, "something that indicates the existence of something else." Nothing negative about that now, is there?

So we could say, "If I hit a bell with a clapper, it rings. Therefore, the bell ringing is a symptom of being hit with a clapper." What's negative about that?

We could also say, "Societies overall advancement in technologies is a symptom of genius." (Are youtarting to see where I'm going with this?)

So Even today, "symptom" doesn't necessarily HAVE to carry negative connotations, but it usually does unfortunately.

Now, if we take that original meaning of Symptom, and apply it to any symptom of Autism, but replace "symptom" with the phrase, "indicative of," suddenly all the negativity disappears.

If we think of our "symptoms" as simply being "indicative of Autism," and not necessarily negative OR positive, we can then begin to ask the following question about each one.

"Is it indicator a good trait, or a negative trait? A strength, a problem, or could it be both?"

When our approach is like that, we've not drawn any conclusions either way, and can then look at each trait objectively.

Hopefully…

I don't really have much of a problem with the "indicators" of Autism, or how they are defined. Most, if not all of them, can be seen in many non-Autistics anyway as is evidenced by the fact that so many people question them. How many times have we seen postings here and elsewhere on the Internet complaining that anybody can have any one of the symptoms of Autism? How many times have we seen people challenge the validity of all forms of high functioning Autism based on the same reasoning?

I've lost count. I think that alone is a pretty good indicator of the fact that any single symptom, if considered by itself, is just a Human trait. It's only when they are combined, and severe in exactly the right combinations that "Autism" appears. And to complicate matters more, confusing people, there can be many different combinations that could equally apply.

To me, they are all simply human traits that only become a problem when they are magnified and combined in just such a way that causes the person to have them to experience great difficulties.

So it's not the traits themselves as chosen by researchers, or the definitions I have a problem with. It's how they are viewed by professionals as a whole, in a negative light without enough consideration given to any positive aspects of them.

And because there is so much negative connotation attached to them, the methodologies used to "treat" them, are approached with an equally negative attitude. Often that negative attitude is subconscious.

For example, I read an article online recently that I thought at first might actually approach repetitive behaviors in a positive light. I'm sure the author felt it did. By the time I reached the end of the article, I was fuming.

I don't recall where it is, so I can't post a link unfortunately. The article began by questioning the negative approaches treatment for repetitive behaviors often use. It then went on to describe the positive aspects of repetitive behaviors. All good so far. The conclusion of the article was there there are a plethora of jobs people with repetitive behaviors would be very good at. Still good, right?

Well it was all fine and dandy until I read the list of example careers an Autistic with strong repetitive behaviors would be good at and should be encouraged to pursue.

Janitorial work
Fast food restaurants
Trash pick up

Should I even bother to list the rest?

It was downright insulting. Gee I wonder why the commenting for the article had been turned off.

So even supposedly well meaning people can let that negative attitude toward our traits sneak in there.

What I would like to see is a total paradigm shift in Autism treatment. We need to stop as a community, and get the professionals to quite doing this to, stop approaching Autistic traits as positive or negative. Stop drawing any conclusions about traits at all. One trait, if seen in one Autistic, could be a bad one. That SAME trait, in a completely different Autistic might be a positive strength.

The problem is, Autism is a SPECTRUM, but professionals too often do not treat it as if it is. Too often, they see a particular trait in a subject, deem it as negative (or positive), and then treat that trait the same damned way for every Autistic they work with!

The last point I have to make, I've made many many times, but I'm never going to stop harping on this one, because it's far too important and far too often ignored.

Even if you do figure out which traits are negative and which are positive, quit focusing on the negative ones for crying out loud! Focus on the best of them. Get even BETTER at them. The stuff you aren't so great at, you'll get better at over time, because you'll need to if you want to continue doing what you are good at and love. And as for the professionals out there: Help your patience and students do what I just described. Quit putting all your efforts into improving what they aren't good at.

This is long enough so I'm going to quit with that.

yep that's what bothers me , deeply.

Let's play the game to the point every genetic marker is flaggedand we have a coherent body
of disciplines all in a state of hegemony for a while, say what , a decade from now.

Now lets close off the other end - the real life impact.

If they begin from the position that all of these are undesirable traits AND they have a covincing body of science then we find our lif eoptions closing.

Jobs, medical insurance, eductaion, where we get to live/how we get treated as old people( you thought about that yet ) how our cihldren and their descendants are treated for generations to come basically sociat offers us what it assumes we need... - this is a huge set of issues. The problem is at no stage in the formulation of the research that leads us to this situation have we been involved in the decsion making.

Like I said to Wavefreak ,part of the problem of the science and research here is the magicians bullet, no one in an influential psoition asks where did the round go in the mouth all they see is the point where it comes out and because thye like the trick they think its the right conclusion and are willing to suspend disbelief concerning the a priori assumption researchers have made about us being disordered and pathological ( to extents they infer ) are correct.

Well ,they can't be accurate if our perspective is not included in the imput stage in formultaion of the catgories - no way shape or form can they be accurate by any social science methodology I can think of . Hence the concclusions and the implications of these conclusions for us are not valid until that involvement occurs.

That is only the start of the unpicking of this model. I don't think the TOM in itself is a stable platform in its current state to feed all the catogories through once they have been adjusted to incorporate our perspective. I don't even think it is satbel enough to feed through what they are applying it to now.

Meme

Here! Here!

While there are a few whose voices are being heard, being the wide spectrum that it is, there simply are NOT enough of them.

Anyone else that's reading this:

While Meme may be talking about a grander scheme than I'm willing right now to internally commit to, every little voice matters. It doesn't matter that you don't have a radio show. It doesn't matter that you aren't on TV. You don't have to be a star to be in this show.

Speak out to the few people who are around you. Especially those who are in professional fields. If enough of us listen to each other, pick up good ideas, and repeat them to those that matter and can make a difference, they'll start hearing some of the same messages from US over an over. At least SOME are bound to listen. Changing a major paradigm like this takes time. It doesn't happen overnight. It takes a LOT of small concerted efforts. It takes the world hearing the same things over and over to get their attention.

I already do this with our local school professionals. I've already more than once gotten to the point of actually yelling at a couple of them, because they really were not listening. Guess what? They do now. I hate getting to that point, but sometimes, dammit, that's what it takes.

We as a community really aren't being heard enough yet by the right people. That has GOT to change.

Example:

I had a phone conversation with my youngest son's sixth grade case manager a while back This is what she said after I tried to explain a better way to handle a certain situation with my son.

"I know what it's like. I understand completely! But I know exactly what to do in these situations, because I've worked with 20 Autistic kids now for twelve years. I've had a lot of training in dealing with Autistic kids, and I think I do know what's best."

"NO! NO YOU DON'T! NO YOU DON'T KNOW WHAT IT'S LIKE! HAVE YOU LIVED WITH AS FOR FIFTY YEARS? HAVE YOU RAISED THREE CHILDREN ON THE SPECTRUM?! YOU HAVE NO CLUE WHAT IT'S LIKE, NOR DO YOU HAVE ANY IDEA WHAT'S BEST.

"I appreciate the efforts you've put in for the past twelve years, but PLEASE don't ever tell me you KNOW what it's like and know what's best. Twelve years is NOTHING compared to what we have under our belts. All combined we have over one hundred years of experience living with AS. You should be learning from US, not the other way round.

"it's time. It's time you quit thinking you know so much, because you really DON'T. It's time to shatter all these paradigms you have. Time to start LISTENING, and stop talking so much. You don't know the HALF of what you think you know."

That conversation actually turned her around. It took her totally off guard, but from there on, she listened. Why we need to get pissed off before people start listening, i don't know. But...

"Whatever works," I say...

So to those of us who can:

SPEAK UP!

What you are dealing with are fundamental questions about morals, ethics and the structure of society. None of these have any objective basis. You have to start with a basic set of assumptions and build out your moral/ethical framework from that. Even something as readily agreed upon as the basic equality of all humans has no objective basis. It must be taken as axiomatic. Conversely, there is no objective basis for rejecting the idea that one class of people is more deserving than another. Problems arise when moral/ethical systems differ in their fundamental assumptions. There are sects of Islam and Christianity that automatically assign higher status to believers than non-believers. Economic systems differ in how they partition the wealthy from the poor. These a have the same OBJECTIVE validity as any other system (none), but stand in stark contrast to even other sects of the same religions.

The place of autistics within any society cannot be divorced from the assumptions that a society uses to build its moral/ethical framework. What you are suggesting is that there are flaws within these basic assumptions and that these must be changed. Further, you are stating that research is tainted by these faulty assumptions.

While I agree that research is ultimately driven by the moral and ethical framework of the society in which it practices, I don't see the entire scope of research into autism as hopelessly tainted by faulty assumptions. I do agree that there are some avenues of research that could benefit by having a more neutral stance towards some autistic behaviors.

Big problem here guys in the opening moves-Cr*P I should have seen this.

1, thes eguys are not stupid- if they have any sense what they will have done is had a idea
what neurolgies that are linked to these catogories. This is just substantiatng what they have second guessed. They will have erred on the side of severe examples of the behavior in the catagories. This effectively draws a circle around them.

2. Okay here's the problem . If they have drawn a circle - they then have the power to define what is classed as autism or not in terms this neurology-behavior constuct . Anything outside that defintion, if they have already made it , they can convincingly argue on thta basis what is or is not is not autism .
hey are creating the power to define what AS is and isn't.

3. Anyone arging against this and they can turn around and say , yeh well you have traits but you are not genuinely autistic because our model does not allow for you. Hence this has massive implications when all joined up an operational for the ones inside the circle ( see above
for jobs insurance etc) and those outside who may need help .

4. If they have got to an integrated point , it's not unassailbale but to so do risks alieneting those who fall outside the integrated model from everything from to benefits to services provided which is exactly what anyone looking to cut the welfare budget would snatch with both hands.- because if they haven't already done this , on the next 'run' they'll tighten the selection criteria of the catgories- to match the emergent understanding of neurologies and how they are related to/underly those behaviours.



Hmmm.