Autism "Awareness" ~ Are we really there?

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Kind of a deep subject for the General Autism Forum, but it covers so many sub-forum topics, it didn't seem appropriate to put anywhere else but here.

The main question I'd like to tackle right now is "For practical purposes, does Autism awareness really exist at a societal level?"

I maintain it does not exist yet. Not for practical purposes anyway.

Sure, a lot more people today than in years past know that Autism isn't just a totally debilitating condition that prevents a child from communicating entirely. Many more people know now that the images of children banging their heads on walls, screaming incessantly, rocking, and carrying cue cards are real but stereotypical examples of Autism. Many more people know today that there are a lot of Autistics who can't be so easily identified as Autistic, because they are functional enough for their Autism not to be so obvious, even to the point of not being visible at all unless one knows what to look for.

I've been tackling the subject of Autism for many years now. Answering posts here (until a few months ago) about everything from the repetitive obvious questions that reappear daily in the GA forum to far more specific problems unique to the individuals posting them.

Most of us know that "If you've seen one person with Autism, you've seen one person with Autism." That Autism is a spectrum, and that Autism never presents itself identically in any two people that have it.

That fact confuses people. It even confuses people who are on the spectrum! Even WE, when we first start looking into Autism, want Autism to fit into some kind of categorical "box" all nice and neat and easy to explain and understand.

But it's not that simple. Autism isn't neat. It isn't something that will fit into a "one size and shape" fits all box! It's a messy, ambiguous, amoebic, conundrumic, and sometimes even oxymoronic condition that befuddles even those of us who thought we'd already wrapped our heads around it.

True, Autism is discussed a lot more than it was twenty and thirty years ago. And true, a lot more people are aware of the existence of high functioning Autism.

But how many people really understand what it really means to be "high functioning" AND be Autistic at the same time? How many people, including professionals, are truly AWARE of the wideness and ambiguity of the Autistic spectrum?

I really don't know, but my own personal experience is that very few really understand it at all. They KNOW high functioning Autism exists, but it still seems to me that the vast majority of people have no clue what it really is.

I've been dealing with educational professionals now for six years that are supposedly trained to deal with high functioning Autistic students, most of whom have to be constantly reminded that our sons are on the Autistic spectrum and what that means for them as educators of them. Over six years I've had the same questions repeatedly posed to me for which the answers have not changed for six solid years. Yet I keep getting the same questions over and over. It's not because it is different people asking them either. I get them from the same individuals repeatedly. Every time, the answers are the same. My answers don't change, yet the questions keep coming up again and again.

For example: I have one son who "shuts down" from time to time. When he shuts down, he doesn't respond to anyone for a while. It could last for an hour or so (most commonly), several hours (less common), or even up to spanning from one day into the next (rare). In every case, he comes out of it on his own eventually. In every case, he cannot explain what caused the shut down. In every case, if anyone attempts to cajole him out of the shut down, the shut down gets worse and lasts longer.

The ONLY successful way to deal with his shut downs is WAIT. Wait until HE comes out of it on his own. In the meantime, don't mess with him. He doesn't get disruptive, he doesn't get disrespectful. He just doesn't respond to anyone, and doesn't engage in any way shape or form.

I've told everyone working with him this is the way he is, and this is the only way to deal with it. Yet over and over I STILL get people asking what they should do about it. STILL get "Any insight?"

Why yes! I do have insight! I GAVE it to you already! Leave him alone!

Why is this so hard to understand? Why is such a simple solution so hard to wrap their minds around?

IMHO, it's because they really do not understand Autism at all!

And that, IMHO, is because all this "Autism Awareness" we keep hearing about is really nothing more than a superficial awareness for the most part. People know it exists. People know that most Autistics are high functioning.

But almost none of them truly understand what it means.

On a side note (kind of), but very relevant, is the question of DSM-V dropping Asperger Syndrome as a diagnosis. I don't have a problem with all of it being under the umbrella of Autism, but there is one possible unfortunate side effect that only just occurred to me.

If the term Asperger is dropped, it may be possible that discussion of Hans Asperger himself may fade from the discussion. That's a problem.

Why?

Because Hans Asperger had the right approach, and that approach, in my opinion is being forgotten on a wide scale. I'll get back to that at the very end of this post.

I really believe that the real reason behind all these constantly repeated questions that have already been answered so many times, is due to society's general perceptions of Autism that are basically wrong to begin with.

Educators have been taught to think of their child students as lumps of clay to be molded. Autistics though, are mixtures of clay and hard granite. Each of us possess certain traits that are solid as rocks, and other traits that are moldable. Every one of us is made up of a single unique recipe of both. Not one of us has exactly the same mixture as any other one of us.

True, NON-Autistics also have a mixture of the two (clay and granite), but we have far more granite in our mix than non-Autistics. We have far more traits that are either near to impossible to change, or are impossible to change.

This confuses educators, who approach even Autistic students as lumps of clay to be molded. When they run into the "hard lumps" within us, they are befuddled!

To make matters even more confusing for them, many of us are made up of clay, granite chunks, and other "stuff" that is sometimes pliable, and sometimes hard as a rock! That fact further confuses them because one day we're capable of something that seems so simple to them, and other days we CAN'T do it at all. This aspect of many of us leads to the all too common remarks like, "Of course he can do it! He's done it before!"

Complicating matters even further is the approach that every time educators run into our hard lumps, they see it as something to be dealt with and "fixed." But these lumps are part of who we are!

For years now I've fought with educators trying to convince them that the best way to deal with us as a whole is to quit trying to treat these lumps within us trying to force them to be pliable, and work only with the pliable parts. When it comes to the mystery "stuff" that is sometimes hard, and sometimes soft, leave it alone when it's hard, and only work with it while it is soft.

Seems like a pretty simple solution, but trying to get them to understand it often feels like an exercise in futility. We get the lip service quite often. "Yeah, that makes a lot of sense!" But in practice we keep going back to the same questions, "It's happening again! Any insight?"

Over and over the same things keep coming up. Over and over I repeat the same advice, they try it for a while and it works for a while, but they almost all eventually find themselves banging their heads against the same brick walls all over again.

Why?

Because the school systems are geared toward formulated one size fits all systems. They've got schedules, deadlines, and government standards to meet that are geared toward molding clay. The approaches used consistently return to the "We've got a hard thing here that doesn't fit the mold. How do we soften it so it will fit?"

Autism doesn't work that way!! !

I'm convinced that because we keep seeing the same problems over and over again, that the level of Autism Awareness isn't as high as it needs to be yet. Not even close. People may be aware of its existence, and even aware of how wide the spectrum actually is, but too few of them actually understand what it all really means.

Hans Asperger said it best. His attitude and entire approach is revealed in the conclusion he wrote after his series of studies of several Autistic patients.

Notice he did NOT say "Autistics can be cured." He did NOT say "Autistics can be trained to behave normally."

He said flatly that "autistic people have their place in ... the social community." He didn't qualify our ability to occupy that place by saying we needed to change or be changed. He said "autistic people." In other words, "as is."

He did say however (later in the conclusion), that we are "capable of development and adjustment." One may argue that he was pointing to our supposed responsibility to change to fit society's standards, but that argument falls apart when one reads the entirety of the conclusion. Notice how his thoughts sway more heavily toward the educator's attitude, not the autistic attitude:



(Italics mine. Also, I think we should forgive Asperger the use of terms like "abnormal" considering the time period he wrote this, and his ultimate conclusion, which is that, in his opinion, society itself ought to adjust to autistics, not just expect autistics to adjust to society.)

(Please do not take the following as an invitation to debate the removal of Asperger Syndrome from the DSM. That debate isn't my point.)

I am a little concerned that the removal of AS from the DSM could result in less discussion of Asperger himself. He is kind of the father of the concept of high functioning Autism, but I think more importantly he understood that society had a responsibility to people with Autism, not to cure them, not to find ways to adjust them to fit society, but to understand them better, adjust to them first, and allow their own abilities to come to play in adjusting themselves to fit somewhere within the fabric of society.

This is an awareness Asperger himself had before AS had even become part of DSM, and long before it became widely accepted as a form of Autism. It is an awareness that is sadly missing today. It is very sad that this attitude, of the man who defined AS for all practical purposes, has been lost and forgotten for all intents and purposes.

IMO, his conclusion ought to be required reading, in depth study and discussion for all professionals working with Autistics in any field.

Until that happens, what passes for Autism Awareness will be nothing but superficial and practically useless.

...????!

Sorry. Some of my posts are an acquired taste. Not for the easily brain cramped (like me!).

Love to post 'em like this, but never read others like them. How AS of me!

I think this happens a lot with people that truly understand solutions is that other people do not fully grasp the true innovators ideas. This has happened in economics and might just be true in general. That your great idea might just be misinterpreted by society as a whole.

I agree, and enjoyed your clay/granite analogy. Any type of bureaucracy (schools in this case) want the cookie cutter solution for dealing with problems that vary greatly within each individual. My district does pretty well with my son, but I do see them push him too hard in areas and letting him slack in areas I think he could achieve more in. Maybe the issue is a lack of intuitive understanding?

Actually, I would say it's a matter of too much intuitive understanding. I don't think typical NT intuition works with Autism.

It's what leads to things like "He's done it before so we know he can do it." (truth: with Autism, what one is capable of can change from day to day or even hour to hour).

Or, "This kid just needs more discipline."

Or, "All he needs is to be inspired."

And a lot of other typical stuff I've heard over and over that does work with typical children, but never works with my own. It's intuition that works when applied to the norm, but doesn't work when applied to Autistics. To get to the point of really understanding what does and doesn't work with an Autistic (which can often be the exact opposite of what traditional logic would tell us), requires a deeper understanding of Autism to begin with. That is what isn't happening much in the field of education. Everything is based on observation alone, and comparing what is seen with norms. That just doesn't work in practice.

The ONLY professionals working with our kids that have ever had any real success, were the ones that "got into" our kid's heads, and tried to see things the way THEY see them, before trying to work with them. One has to see that, and more importantly ACCEPT that first if one expects any success with us.

I agree.



I like your analogy, but I disagree about autistic people having more granite than NT people -- I think that in a society where we are constantly expected to squish ourselves into NT shapes and expected to rewire our brains so that our functioning and thinking are the way that NTs expect them to be, it appears that we have more granite because we are the ones who are constantly being asked to change in very fundamental (and often completely impossible) ways.

The very fact that so many NT folks seem to be incapable of understanding that there are many ways to perceive things, to learn things, to do things -- to think and feel and to function, generally...many types and levels of ability in all areas of life/human existance -- shows that they have quite a lot of granite themselves. I think the granite may be in different places and different shapes and sizes, more of less visible, closer or farther away from the surface, but I have trouble believing that autistic people have more of it as a general rule.

One of the issues, in my opinion, is definitely lack of understanding. Autism is recognized much more now than it used to be, but most NTs/uninformed public only think of the stereotypical Autistic person, or think it's some sort of debilitating disease that should be eradicated. I think that if we stop letting Autism Speaks spread "awareness" their way and instead let ASAN take care of it, as well as teach kids about it in school CORRECTLY, we can achieve some sort of awareness.

The main issue to me is providing the correct information. My principal has allowed me to give a generalization of the Autism Spectrum for psychology classes through presentations and assignments, and before, I have given each class a pre-test to see how much they knew. Most of the students didn't even know the symptoms or how it is identified.

It's just going to take a little more effort, and correction.

Change that to a tremendous lot more, and I'll agree with you 100%!

True, true.

I don't think we actually disagree at all on the basic principle here. You may not agree with the way I tend to describe and apply the analogy, but such is the risk of using analogies, especially in a forum full of autistics ready to pounce on the slightest flaw in the analogy. Analogies are never 100% accurate because if one analyzes any analogy in minute detail, one can always locate a perceived flaw.

That said though, I wouldn't agree that NT's are not capable of understanding there are many ways to perceive things. In fact, that is one of the most popular misconceptions about Autistics. It isn't really true of either groups.

I have found though, in my own experience, that NT's tend to see us as either not having that capability, or not willing to use it, yet they themselves often refuse to even attempt to see things from OUR point of view just because it doesn't make sense to them, and they can't imagine it could possibly make sense even to us. It's a true conundrum. It does seem that they often refuse to accept that the way we see things could possibly make any sense (even to us), yet accuse us frequently of refusing to even try to see the sense in the way they view things.


What baffles me about that is that by their own standards, WE are the ones who have limited capability to envision how others think, yet instead of THEM, who are supposed to be so much better at it, going to the effort to understand OUR views, they tend to insist WE make the effort to understand THEM first, before they will help!

Hah!

I just thought of another way to apply the commonly used analogy that we tend to be like computers.

Let's say, for the sake of this discussion, that we are computers, and NT's are the operators.

The way many educators approach us is a lot like a computer operator sitting down at their workstation and expecting to interact with their computer the same way they interact with a human being.

We all know that doesn't work. We all know that somebody has to learn how the computer "thinks" before anyone can communicate with it.

But no. That isn't right. All this computer needs is discipline. So if it doesn't do what I expect it to do, I'll put it in time out. And if that doesn't work I'll send it to the principle's office.

I agree that Autism Awareness is eggstraordinarily superficial with its ugly ribbons, ugly puzzles, and ugly tattoos plastered over nothing to look purrrty on the surface, eggsept that the symbols look hideous to me. Currently, Autism Awareness is moar moar moar like a feel-good festival for NTs to be with each other in a social group alternately smalltalking and fearmongering than ackshul knowledge and understanding of any kind of autism.

In addition to NTs promoting the wrong kind of Autism Awareness, autistic self-advocates seem to be doing the same thing in a different way. I don't know eggsacly what they do at autism-related events, but I have been reading the blogs of all kinds of people in the autism community, and I have noticed that the autistic self-advocates rarely say anything practical, like anything that eggsplains autistic traits to other people or suggests practical solutions to specific problems caused by autistic traits or thinking about what educational materials and techniques would work for autistic children based on their own eggsperiences of learning in school. Instead, there is just a bunch of talk about the abstract ideals of autism acceptance and fancy concepts of disability-related issues that I can't even understand and analyses of social injustice and how horrible it is that they themselves are considered high-functioning by others and how verry merry berry empathic they are.

These are not the kinds of Autism Awareness that I want. I want autism professionals and educators to study and understand the traits of autism and how they affect autistic people. I want autistic people to develop real things to help each other. I am developing educational materials for autistic kids at the autism non-profit where I work, and also working to provide practical information to school officials in the school districts in my area. I would like to see some big autism self-advocacy organizations prioritize practical things over the stuff that they are doing now.

Eggzaktly!! !

This seems to me one of the main reasons why so many kids are diagnosed with 'disorders' and 'learning disabilities'. The school system itself makes differences in development a problem.

All kids are different. Some may better fit the cookie cutter education, but many don't and before you know it autism, adhd, dyslexia, dyscalculia, visual-spatial thinking and what have you become a 'problem'.

It is no surprise to me that children in schools based on individual teaching methods (Montessori, Jena plan, Dalton) have a lot less 'problems'. I went to a Montessori school myself and while I vaguely remember that there were times when I could not speak, this was never a problem in my school because children were allowed to withdraw or work on their own without interacting.

Schools like these would also be better for NT children with learning disabilities, visual-spatial thinkers or an IQ outside of the 'normal' range (both low and high). The problem is that it takes dedicated and sensitive teachers. A Montessori teacher studies for an additional 4 years on top of the regular college degree. Having highly trained teachers like that in every school would increase the cost of tuition a great deal.

I've spoken to teachers in regular public schools who see the sense of individual tuition, but are limited by the amount of money the school receives. They don't see a way out, and frankly, neither do I. The only full range (ages 3 to 18 ) Montessori school in the Netherlands is a private school and horribly expensive by Dutch standards. Obviously, only a few people could afford such tuition for their children, which makes Montessori rather elitist. The same would apply to any form of individual teaching method.

Your name reminds me of the tourettes episode of south park.