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Location: Toronto, Ontario, Canada

Writer/Curator/Founder of The Autism Acceptance Project. Contributing Author to Between Interruptions: Thirty Women Tell the Truth About Motherhood, and Concepts of Normality by Wendy Lawson, and soon to be published Gravity Pulls You In. Writing my own book. Lecturer on autism and the media and parenting. Current graduate student Critical Disability Studies and most importantly, mother of Adam -- a new and emerging writer.

“There is no hope unmingled with fear, and no fear unmingled with hope.” -- Baruch Spinoza

Sunday, June 10, 2007

 

Everyday Kitsch -- it happens in autism too

Kitsch was a term used in late nineteenth to early twentieth century Germany to define bad art – art that sentimentalized everyday experience or “that appeals to beliefs and emotions encouraging vanity, prejudices, or unjustified fears and dubious successes.” Literally, kitsch “implies an artistic creation ‘that makes use of refuse taken bodily from the rubbish dump.’” (Catherine Lagg – From Kitsch: From Education to Public Policy).

We hear the term kitsch applied to the art of the Nazi era, if in fact Hitler’s own pastoral art. Visiting my ancestral home (that is the home of my grandparents who had adopted my father just before the war from Poland or Sweden – we do not know exactly wherefrom. Thus, I can here extract myself in a way from the uncomfortable notion that I actually belonged or came from German culture, while understanding it deeply), I was surrounded by kitsch. Be it the pictures of the mountains hanging on their walls, to even the typical smell of Kuchen coming out of the kitchen, to the idiotic dirndl Oma made me wear on Easter morning, I was personally inundated with kitsch, if not a living, breathing example fetching coloured eggs and repeating Danke Schoen too many times to appease the generousity bestowed on me by a grandmother who needed constant praise.

Taking it further, Hitler destroyed or expelled any artists that provoked the status quo. Perhaps this is when the term was best known. As Dadaists challenged society, Hitler himself was threatened. Only art that resurrected Greek mythologies or pastoral settings that celebrated German “cultural” life, that is, the Deutsches Volkes, was permitted in Hitler’s Germany. In fact, a good German home hung the picture of the Furher himself. Imagine eating dinner with a nice painting of Hitler watching over you – iconoclized for your adoration.

Kitsch is kitsch because it is simple and predictable. Art, however, is political. Almost always. It is so because, as Lagg so adeptly describes: “artists build on and play with their audience’s sense of history, culture and reality…art portrays relationships that exist among individuals, groups an inanimate objects….Art invades a person’s sense of self to literally play with their mind. Weaving through a person’s consciousness, art occasionally teases, reaffirms, jolts, disturbs, challenges, and pulls threads of deeply held convictions and beliefs.”

Most importantly, as I reminisce about what art is and what its purpose is, I reflect on the autism “debates” and consider that we are all at risk of becoming kitsch in the autism world.

The easy use of symbolism says Lagg, “gives Kitsch immense political utility. Kitsch can simultaneously provide psychological comfort and reinforce a host of national mythologies. It has immediacy that art must avoid.”

Autism organizations use many symbols and historic methods of raising money (that old cure word comes to mind as a type of easy access to heartstrings), that work extraordinarily well. One-liners that are supposed to summarize and encapsulate this so-called “struggle,” are kitsch and so too, I am wary that an organization that promotes autism “acceptance” is similarly at risk.

Jargon like “mercury moms,” or “curebies,” is also becoming dangerously close to generalizing categories that parents come to refer to as “camps” in the autism arena. In any subject, where we see a condensation of the “good guys” versus the “bad,” we are creating a simple narrative rather than addressing its real dimensions and complexities.

Acceptance of autism is such a loaded concept, that most people aren’t sure how to accept it. The term gets lost into some idealized notion of a pacifist or perfect world. Idealized, it assumes that we are all going to just get along, holding hands to achieve our dream of accepting diversity. (I am pointing at myself for using symbols of hands and holding with the caveat that I do like hands as a symbol of creating things – and equally, they are capable of destroying). It’s a nice dream, but this idea of living in a world that never questions, where we happily skip across the field to the sunset together is just well, kitsch.

It is why I will not aggressively expand The Autism Acceptance Project into yet another autism charity, for I do not yet know how it will unfold. It is the reason why I called it a project, because I am aware of how easy it is to fall into the traps that charities always seem to fall into – having to appease a corporate funder, or a group of people who believe in one ideology. Instead, TAAProject was established to continue the dialogue -- in different forms be it through art, film, lectures and other creative ways. It is not an easy one-step to success organization. It is an organization that hopes to raise, provoke and discuss.

We will always have disagreements and we should. We should always question each other. We should feel uncomfortable and alerted when we begin to oversimplify the world, no matter what “side” we believe we are on – be it the line “we must fight the autism epidemic” to “nothing about us without us.” I like the last line in principle because it means that autistic people must be the people who lead the autism dialogue. But even that term might be too exclusive. Once we start believing too heartily in something, we end up being ignorant of the many other truths out there. While the Nothing Without Us line may provoke, as it should, I can also see the way it is used not completely applicable to the real complexion of the autism community.

“Kitsch differs from art by being a powerful political construction designed to colonize the receiver’s consciousness. As such, kitsch is the beautiful lie. It reassures and comforts the receiver through the exploitation of cultural myths and readily understood symbolism. But Kitsch neither challenges nor subverts the larger social order because it must pacify, not provoke.”


No question that we need to do more of the latter. We need to consider that diversity means also accepting that there are many different realities within which autistic people live. By forming The Autism Acceptance Project, I have at least, met many more autistic individuals with differing views. It means that I seek the real truth from a bulk of autistic individuals and not a few. It means I do not listen to non autistics as the source of autism information and experience, but I do acknowledge that parents are the prime caregivers of their children and have a real stake in how they manage the lives of their children. It means I acknowledge that some parents and even autistic adults are having a harder time than others. One autistic adult once jested me when I wrote the post “The Learning Curve To Acceptance.” She said, “acceptance is not a learning curve.” I waffle on that one. I agree, to accept just is. It is free of debates, and ponderings of “how to accept.” And yet, society is on the learning curve of opening their minds to what acceptance really means in autism. It is no different than learning to accept women in the workplace. It is no different than accepting the black community not as inferior, but as equal. Acceptance did take activism and education.

The acceptance of autistic people must not be subverted to kitsch. It should not depend on “easily invoked symbols to address political dilemmas” and limit our thinking.

If I edited everything I received The Autism Acceptance Project would be ridiculous – another camp with self-made belief systems, and we’ve unfortunately experienced this with the ABA movement here in Canada. A women with Aspergers sent me a long letter. She gave me permission to print it here, but I will only give a few lines of it. She said:


Not all individuals with autism-aspergers speak for me either.

I am tired of people who are excelling at levels way beyond me proclaiming to be MY VOICE. They bask in the glory of their autism and that is fine for them. I am still fighting for my system to give me the HELP I NEED. This makes me sound judgy but...

AM I THE ONLY PERSON WITH ASPERGERS WHO WANTS HELP WITH ROADBLOCKS THAT MY AUTISM CAUSES ME???????

I do believe in all of you and many share but where are the autistics advocating for help? I mean the right kind of help. I know it does not exist but it never will if we don't fight for it and then again its the ones in the middle who may wish for it but cannot fight for it like others because we are not at that level of functioning to be able to consistently advocate as some others are able to do…

Note that I do not think functioning levels are all that important as some can excel in different ways throughout the spectrum. I guess I mean that some of us just don't do as well as others and that is just a reality. We may be more severe in the fact that day to day life is tougher. Something like that. I am not exactly sure how to use the right words there…

I will not write a blog that only discusses autism rights WITHOUT including MY RIGHTS for help with things I need help with.

For those aspies who do not need that help and seem to think we are all the same, I feel they hurt those like me who wish to get help. I mean the good kind of help not the curebie kind.

I see 2 things with people with ASD who are doing well:

1: They either had a major support system and lots of help for sensory issues, social skills, etc or...
2: The are possibly higher functioning in a way that has not left them unable to maintain a quality of life that works for them. They can excel in a field etc. I cannot focus well enough to do that. Maybe with the proper help I could but that is not the reality in my life and probably not in others lives as well…

I have learned more about my autism from the parents out there because they cover the issues their children face and that helps me. It helps me more than some people with ASD simply hanging out and saying "respect me" etc. Yes that matters but I have only met a few with ASD who have actually given me information that I could use to learn to build a better life for myself or better understanding of my ASD. I do not mean in a cure way. I am sure you know what I mean when I talk of help. No I don't want ABA'd…

I saw in your previous blog that you ask them to join the Board of TAAP and they say no. I get that. To them the task is too hard - too overwhelming. The organization and sequencing skills needed and the focus needed may be an issue for them. Maybe with a little help a little bit at a time some of them can learn to take it on. Not all at once but one little step at a time. I hold back when I feel I am expected to know ALL of something at once. If given a chance to be on a Board such as TAAP, I would be honored (if I lived in Canada) but would only do so if given the "help": needed. Yes I have autism and I can not do it alone. Isn't that what inclusion is all about? To include to me is to love one as they are to educate yourself on their disability but also to be real and to give them the necessary help when needed and let them go when they do not need help and if they grow in some areas where help used to be needed they may not need it any longer. They may excel after they learn to do their job. It’s the patience to assist them in the beginning that can really be the factor in where they are later on. This varies for all of course.

I want today's adults and our little Adams of the world to be included. I want Adam to get what he needs now and in the future. If he needs help, I hope and pray he gets it and does not get ignored as so many of us are. I hope he does well but I am a realist and if he needs assistance we need a world that is willing to give it in the best possible way for all of our Adam's.

I read how bad it is in Canada. Not better here Estee. In my town I just was told they want to diagnose an ASD boy schizophrenic. FOR CONVIENENCE. They will not even asses for ASD. Why? It’s because they would need to learn something new and they are too lazy to do that. Do they care about this boy? NO that is obvious.

I go for a SSI review in 2 weeks. I am about to get reviewed by someone who knows nothing of ASD. Go figure. You see the war is offline and it sucks. I can not then get online and say that it is ALL OK. It is not All OK. I am so happy in some ways and yes I love the title of your blog. But it is not joy all the time. I cry daily at the lack of help out there for those of us who want it. Then again "The Joy Of Autism" is my only blog I read daily. It has become a part of my very strict routine.

Thank you so much and maybe someday I will join you all in my advocating kind of way.


What is striking to me time and time again, is how many different autistic voices there really are out there, and that we need this time to listen and digest. Autism cannot be conveniently packaged into puzzle pieces or colourful ribbons, although I would much prefer if I had to, to wear the latter, more positive symbol. It cannot be “treated” in one way or another. Like an individual, it is complicated. It is diverse. It cannot be tamed to behave in a way we want so that we can completely understand. If we wait or try, it may even be too late.

Truth is uncomfortable. There are many truths based on an individual's experience. Truth about autism must acknowledge the greater community -- even the one that we may find offensive -- and seeks to settle somewhere in the middle as a means of living together. While women and black people may have rights, they are not totally "accepted." That is an unfortunate truth. At the risk of sounding kitsch, let's stick together and work towards a more accepting world, for the work never seems to have an end.

30 Comments:

Blogger mcewen said...

I am wearing my beret and smock with a paint brush tucked behind my ear!

Whilst I know very little about Kitsch or art for that matter, I do know that in classical art, at the time it was produced, a painting could have many symbols that the individuals of that era could relate to and gave the painting a whole different meaning than we might [not] see today.

I think what we [I] so often miss about the spectrum of autism, is the whole layer of personality or character that underlies it - is it any wonder that a spectrum becomes so diverse when we [I] remember to combine the two.
Best wishes

8:54 AM  
Blogger ballastexistenz said...

The problem I have with that sort of statement is... I mean maybe this person has just never read autistics.org, but, off the top of my head:

Autobiography of Anonymous

Inertia

Help, I seem to be getting more autistic

The conference presentation I won't make but want to

to the Kit Weintraubs of the world

Why I am angry

Input Needed Now

Reply to the initiator of the ARK rally

You Have It So Good

Those all articles by various different people on one of the major anti-cure websites that have large chunks of them about autistic people needing help with stuff. I know I've talked to legislators and parents about these issues, this is part of the sort of advocacy I tend to do, and a lot of others I know as well.

All of whom are sick of being told, whether by autistic people or non-autistic people, that our political views about acceptance mean we don't want or need help. Which is a really dangerous position for anyone to take about us.

In fact most of the autistic people I have known who are seriously political about autism (including acceptance) have been people who need a lot of help in areas that most people don't.

In fact this is a major source of frustration to some of us. At autistics.org, for instance, we need more people who don't need as much assistance helping us out with things, but where are they when we need them? The two people who do the bulk of the work are both physically and cognitively disabled and have long-term health problems.

People contribute money but they rarely help us out with the webserver or organizational and financial issues (we've finally got someone handling the CafePress store for us though).

And the only thing we've been able to conclude over time is that the people who can do all this stuff, don't see as much need to be political in this nature because they're not bearing the major brunt of the oppression in the first place.

So for us it's seemed quite the opposite, like all the people who could really do a lot of work towards this acceptance and other political stuff, aren't, and it's being left in the hands of people who can't actually be as effective at it because we just plain don't have the energy. Even though there are plenty of autistic people out there who would be effective at it, they don't tend to have the kind of motivation we do for needing to put forth these viewpoints.

So we've found the total opposite of what the woman you got a letter from describes.

I think that finding "middle ground," though, is a really lousy way to find truth. Truth isn't the average of everyone's opinion, it's whatever exists, independent of whether anyone believes in it or not.

9:30 AM  
Blogger Autism Reality NB said...

"If I edited everything I received The Autism Acceptance Project would be ridiculous – another camp with self-made belief systems, and we’ve unfortunately experienced this with the ABA movement here in Canada."

Aaaah, the big bad wolf ABA movement again. Hard to reconcile this latest one line put down of parents seeking to improve their childrens' lives with the topic of your article.

10:57 AM  
Blogger Estee Klar-Wolfond said...

Amanda,

"Truth isn't the average of everyone's opinion, it's whatever exists, independent of whether anyone believes in it or not."

I said the truth is based on our experiences -- collective, independent, subjective. I don't know if we all agree that in order to live here together on this earth we have to find a common ground -- whatever that ends up being.

I'm tired today and may not be expressing myself clearly.

I will let the woman respond and reveal herself for your other comments if she so wishes to reveal or remain anonymous -- I don't know.

Harold,

No...hard to reconcile the fact that this ABA movement in Canada cannot recognize the kitsch within its own movement -- like Hitler's -- so incredibly dangerous in representing human beings as "a burden on society," and "not even aware." When will it fess up?

IF and when it ever does perhaps we can actually do something that actually helps autistic people in valuable and meaningful ways without degrading them as this movement has already done. It has in the minds and experiences of every parent I meet dominated the discourse about autism in negative and damaging ways.

We need this ability to self-reflect on all of our words, rhetoric and actions no matter who we are.

11:41 AM  
Blogger ballastexistenz said...

I don't think the truth is subjective, though, only our perception of it is.

Nothing's wrong with finding common ground when it (a) exists and (b) is necessary, but I'd consider that separate from finding out the truth about anything.

12:13 PM  
Blogger Estee Klar-Wolfond said...

Here's one in keeping with the kitsch theme:

“A thing is not necessarily true because a man dies for it.” --
Oscar Wilde

12:29 PM  
Blogger Estee Klar-Wolfond said...

You are also right -- I would have served my intent better had I said "subjective reality." We know there's a lot of that going around. ;)

12:36 PM  
Anonymous -Brian- said...

That is the one hallmark of autism that cannot be over-emphasized enough--individuality. Each autistic person is so unique that to try to describe them as being "autistic", in itself, is a form of kitsch in putting everyone in the same "basket" and saying that each and every person with autism needs to be given a "lesson" in how to live (even if that person wants something other than this "lesson", in the form of help for that person).

That is where the term "stereotyping" comes to mind, as once a person has heard that an autistic found help by taking a certain vitamin (as an example), those who practice this kitsch of stereotyping all would say that all autistic individuals *must* take that medicine--like it or not! How folly!

Will human nature ever be able to treat individual human beings as individual human beings? Who says that, if one person needs cough drops for a cold, that everyone (the world over) must take a cough drop for a cold? As parents of autistic children know full well, what might be very helpful to the father of one autistic child could send another father of an autistic child to hospital. Again, individuality cannot be over emphasized enough...day, after day, after day, even for anyone with autistic traits of any kind, whether diagnosed or not.

When an autistic person is able to outline what he or she wants, as far as help, that is just, to use an analogy, unlocking the door, but the door, however sealed and tight, still must be opened for that person to get the help that he or she wants, for that individual's own individual life, without anyone trying to intimidate that person with a kitsch of any kind, as the door opens....

12:44 PM  
Anonymous Anonymous said...

"The problem I have with that sort of statement is... I mean maybe this person has just never read autistics.org, but, off the top of my head"

Hi Amanda. This is Aspiegirl. I wrote the letter to Estee.

You are right, I have never been to autistics,org. I joined it once after reading one of your blogs but at the time was to chicken to post. I forgot I joined it until now. Not to be rude, my brain is just like that. I also have inertia and am getting worse in all ways as I am getting older I do not know why.

I want to share that I have been to some forums and it seems to me that it more about bragging of being autistic and hating neurotypicals sort of like complaining and I do not care if that is what some want to do I just want to post in a more serious way.

I have been mis treated by neurotypicals too and I do want to talk of it but in a way of how to help stop it or change it not just to post to post. I hope this makes sense. I just woke up. I also wrote this once and hit cut instead of paste and wooosh it was gone.

I also want to share of issues effecting myself or others on autism itself and how we can get others to see our needs. For those of us who do have need for help in some areas, etc.

You are right on one thing. I guess I have not found a place yet where I feel at home so to speak to just share and not worry so much on what others say. Or where other ASD people are sharing like you say they do on that site.

I started a blog on blog spot a while back when I was feeling not to good (physically) I never kept it going. I am stuck. I can't figure how to add the column on the side or how to add tags. I am not as techy as some may think.

Last I want to add that you are one who speaks as an advocate in a "real" way and I respect that very much. Thank you.

((HUGS))

Kathy - Aspiegirl

PS: I tried to link to my google blog and I think I just killed it. I cant get it to work. I spent an hour trying and a meltdown too. I give up here is the url. I will try to figure how to fix it later.

http://aspiegirlscorner.blogspot.com/

I hope it is still there.

1:08 PM  
Anonymous Anonymous said...

Aspiegirl again. I just read Amanda's comment for the 3rd time and I think we are saying the same thing. I am just sort of new on trying to express myself. But I really get her point and agree with it. I sort of discuss this type of issues with my roomate. In that over and over way some of us autistics do as in I NEVER STOP TALKING ABOUT IT. From many angles. I was treated bad in hospitals and group homes and I am all for fighting for us to be heard a "real people" not from the pity angle though. I have questioned myself why the individuals with ASD who are a little stronger don't help so much. Maybe it is because they have not experienced that kind of past. Not saying they dont care though. Ok trying to get brave here. I hope I wrote this ok.

Brian. I like what you shared too. I also read once you write real not flowered words and I have to say I respect "real" and its easier for me to understand too. Thank you Brian.

So here is my airhead side. I still can't figure out what Kitsch is. I have to read that better. If its to lump something into a group and judge it ALL the same way. I get that. :)

((HUGS))

Aspiegirl

1:24 PM  
Blogger Camille said...

"For those aspies who do not need that help and seem to think we are all the same, "

Who are these people? Who are the "aspies" and don't recongnize a serious need for themselves to get help, support, aid, respect and so forth from others.? I have never seen one. Not one. If this is this woman's main complaint I think she has no complaint at all.

2:25 PM  
Anonymous Anonymous said...

The way we think of ourselves and others has rapidly changed with the advent of computers and satellite communication. Governments move too slowly to keep up with a technological society that is communicating 24 hours a day. In my mind, change will come when you know how to deal and act within a society of hyper-individuality.

4:28 PM  
Blogger Estee Klar-Wolfond said...

Aspiegirl said: "I still can't figure out what Kitsch is. I have to read that better. If its to lump something into a group and judge it ALL the same way. I get that. :)"
----

Kitsch is to take an idea and sentimentalize it. Or in my view, to use rhetoric and gloss over the reality. "War against autism" is a kitsch statement. It is spectacle-ized. We see this often in politics.

Lagg's example -- Michael Dukakis and his "heroic immigrant" campaign...kitsch.

Political mud-slinging is kitsch.

To use a statement and not really understand it's meaning -- an overuse say of "acceptance," and not really accepting at all -- that is kitsch.

To call ABA "the only life-saving way to cure autism" is kitsch.

4:53 PM  
Blogger Estee Klar-Wolfond said...

Camille said: "Who are these people? Who are the "aspies" and don't recongnize a serious need for themselves to get help, support, aid, respect and so forth from others.? I have never seen one. Not one. If this is this woman's main complaint I think she has no complaint at all."

I actually have not come across an individual with Aspergers who has said they do not need or want help. I don't hear that coming from this statement. But the fact of the matter is, here is a statement from someone that needs to be discussed.

I just don't want to put any words into anyone's mouths here. I just didn't hear Aspiegirl saying that Aspies are saying that they don't need help per se. I heard her saying that she does not agree with the way in which everyone advocates, and indeed, we have witnessed over the course of the past few days, some different styles which I believe is how this email came to me.

5:08 PM  
Blogger Aspiegirl44 said...

Camille. I did not mean that aspies think they need no help. I am new to trying to post in blogs and may not word myself just right. I mean that some people may advocate in a way that may not be the way I would choose to do so. It is ok if they choose to advocate that way but if they imply we all feel like them then it is sort of like them putting words in my mouth I myself would not use.

I forgot which one but i was on a forum once where a man asked for help for something and another aspie told him to stop whining and enjoy that he had aspergers and go get a job in his interest. I felt bad for that man who needed help and the other man seemed not to care. He only wanted the man to be glad of his giftedness. That is not the exact quote. I only wanted to point out the kind of comments I have seen which made me scared to death to post for help, etc.

I hope this clarifies more.

Thank you Estee for the explanations of Kitsch. I get it better now. :)

5:47 PM  
Blogger farmwifetwo said...

I think you'll find that the most "normal" of those with ASD don't wish to be labelled ASD any longer. They have jobs, lives, families, children... any or all of the above.

Therefore they aren't interested in being dragged into something they no longer feel they "need" (support, friendship etc). For lack of a better word. So no, they probably will not offer support or aid unless you go to them and tell them what the issue is and ask for help.

B/c as an email I wrote to a friend... on another topic but it applies... life goes on. Some stay behind - either moving more slowly or stagnant, and others move forward. Those that move forward briskly have other issues that come up and take over so ASD or another "thing" that concerns them falls to the side.

But I think the bigger issue isn't whether or not just those with ASD can get help with mental health issues (OCD, sensory, sleeping etc)... it's a lack of mental health/OT help for everyone no matter what the "illness" is. Toss in a spectrum that is so varied that I have 2 totally opposite children one 2 totally opposite ends of the spectrum... where do you start?? I think the biggest mistake ever made, was instead of treating everyone differently, they labelled everyone as "autistic" getting rid of the diversiveness of the illness, the individuality of "treatments" (again, lack of a better word) and no longer having to treat everyone as an individual.

I too feel that the assumption that ABA in Ontario especially - I call it "training my pet dog" - has done a disservice to the families and children they claim to help.

S.

6:42 PM  
Blogger Estee Klar-Wolfond said...

I fear I did not make my post clear on the need to take in many perspectives of autistic people. It does complicate matters and I as well as other autistic people may vehmently disagree with what autistic people say. But we cannot exclude the voices if we are to accept all of them, not naively, not always agreeing, but accepting the vast array of possibilities.

We witness way too many overgeneralizations in autism already. We have to be careful not to perpetuate them.

6:50 PM  
Blogger Estee Klar-Wolfond said...

I am also engaging in something here I cannot keep up with tonight because I am getting ill. I got bit by a bug yesterday and my arm is swelling and I'm beginning to break out in hives for which I may have to go to hospital.....sorry if I'm not very clear.

6:53 PM  
Anonymous -Brian- said...

Quoting farmwifetwo:

"I think the biggest mistake ever made, was instead of treating everyone differently, they labelled everyone as 'autistic' getting rid of the diversiveness of the illness, the individuality of 'treatments' (again, lack of a better word) and no longer having to treat everyone as an individual."

That is what I was saying in my previous comment to this blog, when I mentioned that:
"...Each autistic person is so unique that to try to describe them as being 'autistic', in itself, is a form of kitsch in putting everyone in the same 'basket'..."

It's like the words "autism" and "autistic" have become a political tool that others tend to use against us for their own political, economic, and social gains...to further their own status--as a kitsch was used in Estee's outline in the early 20th century in parts of Europe.

7:46 PM  
Blogger ballastexistenz said...

I sure could have used a whole lot less mental health crud growing up frankly.

I have actually come across autistic people who really don't grasp the functioning problems autistic people can have. I tried to simply describe in emotion-neutral terms my difficulties, and they said things like, "I have no sympathy for someone who would deliberately starve themselves while sitting next to food." When it was not deliberate. They decided that my problems with those things were an unconscious suicidal urge because they couldn't imagine the way I perceived the world. They told me my descriptions (which were only meant to be descriptions, not emotion-provoking) were only self-pity.

I posted a bit of my original response to some of them in More on Aspification (scroll down to the part that's a giant blockquote).

So, yeah, that does exist. Definitely.

10:25 PM  
Blogger Estee Klar-Wolfond said...

Amanda said in the aforementioned blog post on "Aspification":

"I don’t agree with much of what Sue Rubin has to say, but when it comes to being ostracized in sections of the autistic community because we’re not normal enough, I’m in the same boat as her and will fight for everyone like us (not that we are identical, but that we are lumped into the same particular group of people here) to be recognized as a valid human being with a total right to state her opinion."

You stated the goal right there.

6:52 AM  
Blogger farmwifetwo said...

"I have actually come across autistic people who really don't grasp the functioning problems autistic people can have."

I'm not surprised. Remember, the spectrum is as wide and varied as everyone is an individual. They may simply be unable to emotionally, cognitively etc understand the issues. B/c they suffer from the same illness you do - but not the same. Personally, I think you'd have more supportive discussion on autism issues, symptoms, coping strategies with parents that see the variability of the illness, than someone else who suffers from it, and can't see all it's facets and how others are affected by it.

Estee - how's the arm??

9:45 AM  
Anonymous -Brian- said...

Quoting ballastexistenz:

"They told me my descriptions (which were only meant to be descriptions, not emotion-provoking) were only self-pity."

To some people of every description possible, the term "self-pity" and the term "autism" are pure synonyms; that is, a person who is autistic has one basic characteristic to them: self-pity, and if this person could (as they see it) get rid of that self-pity, the problems with ASD would simply evaporate...immediately!

It would be like telling Vincent vanGogh to feel proud of his paintings and start charging (today's equivalent of ) $1,000,000 for his paintings, instead of the 10 cents he was getting--to show how proud he was, and was not subject to that "self-pity" that is the "sine quo non" of autism (according to these "experts").

The problem here, is that some of these "experts" are autistic, themselves! One autistic person accused me of "self-pity" when I told him that I was on disability allowance. He told me that I was just using autism as a "crutch", and that I had no justification for not going out and getting a job as he did--at a community college from which he graduated.

It's like telling everyone in a wheelchair that if Rick Hansen could wheelchair his way across Canada, everyone in a wheelchair could do the same thing--bar nothing!

Again, individuality and uniqueness are the keys that are being constantly ingored by "lumpin" us together (like dousing us with "autistic litter")...

The only classification that is worthy of humanitarian respect is the "human" classification...with respect for all opinions.

That, again, comes under attack (even by autistics) as they say that any respect (yes, ANY respect) has to be earned, and if an autistic does not agree with them on a certain point or issue, that autistic is not worthy of respect, as he or she has not earned it.

Therefore, the word respect is not enough. We might have to go back to the Greek term "agape" or some other term in another language to symbolize what we are trying to say, ...that despite our vehement differences, we still regard each other as humans, beyond any other classification.

9:54 AM  
Anonymous -Brian- said...

Quoting farmwifetwo:

"I'm not surprised. Remember, the spectrum is as wide and varied as everyone is an individual. They may simply be unable to emotionally, cognitively etc understand the issues. B/c they suffer from the same illness you do - but not the same. Personally, I think you'd have more supportive discussion on autism issues, symptoms, coping strategies with parents that see the variability of the illness, than someone else who suffers from it, and can't see all it's facets and how others are affected by it."

I would reverse this, and go the route of autistic.org. That route would show that neurotypical people do no understand the neurotypical disorder that they suffer from, and that, if they were to go to an discussion group of people with autism, they could get far better understanding of their own condition (note: not the condition of their offspring) with
all the variables of neurotypical disorder.

It's like Oliver Sacks pointed out: We are all like cultural anthropologists exploring the unknown world of another culture, whether that culture is autism or neurotypical culture, and we might get to know much more about ourselves if we study the basis of the other culture.

Then, again, in any culture, no one can speak on behalf of everyone else in that culture. No gay person can speak on behalf of all gays; no afro-american can speak on behalf of all afro-americans; no gypsies can speak on behalf of all gypsies; no left-wing politicians can speak on behalf of all left-wing politicians; no Scotsman can speak on behalf of all Scotsmen...etc...

We are just human beings. How else can we simplify life? Is the group, itself, the downfall of all indications of individuality? I don't think so; nothing can destroy human uniqueness, and make us all into clones of each other

10:24 AM  
Anonymous Ballastexistenz said...

farmwifetwo, I have many genuine illnesses, including asthma, but it's not accurate to tell autistic people we "suffer from an illness" meaning autism.

11:44 AM  
Blogger Estee Klar-Wolfond said...

I am back -- I am with Amanda -- I am VERY uncomfortable with the use of "illness." Autistic people are not ill. They are autistic. Down Syndrome people are not ill, they are people with Down Syndrome.

12:10 PM  
Blogger farmwifetwo said...

"Illness" - Which shows the problem of the limitations of the english language.

I this weekend showed off my "ASD side" or as I posted "geek" side. And suffered another social mistake. It's on the blog.

Brian - I believe you just made the same mistake and the same assumptions that those without autism make... that nobody else tries to understand or care. That does a dis-service to the very group that's going to help with running an organization that may help to "speak" for you.

I work VERY hard to see, listen and learn all the quirks in both children and empathise with them. Every day, there's something new. Very little surprises me anymore. That doesn't mean that it's ok to misbehave or go against societies rules... NO, and why no, still have to be taught and understood.

But I stand on the outside... and can help show someone to plan lists to get through their days like I do. Organize their world enough that some minimal routines might help. I know what funding is available and who to harrass to get it. Which Dr's are sympathetic. Which should be advoided.

I don't ASSUME (to make an ass out of you and me) anything anymore about ASD. I don't feel ANY method of dealing with ASD is appropriate at the exclusion of all others.

There are others like us. But you have to weed through the rest to get there.

I do have a question for you though... why would I want to label my son and push him into a "culture" instead of allowing him access to the world as a whole. That's one of the questions I have when people try to box themselves. Even those who say they are "French Canadian, German Canadian, African Canadian" are not all that live in Canada Canadian but maybe have different views of the world??

Need to deal with a bandaid phobia - NVLD...

S.

2:43 PM  
Anonymous Anonymous said...

This is Aspiegirl. My blog wont show up again. So an hour later of trying, I am using the anonymous.

Estee. I hope your are doing better, I was thinking of you.

Quoting Amanda:

"I have no sympathy for someone who would deliberately starve themselves while sitting next to food."

Amanda, I believe your blog on aspification was one of the first blogs I found on blog spot. I read it at that time to my roommate because I had some of the same issues. Not to the same degree but I could really relate. I had never found anyone with autism who had the food issues you shared. In my past on medication (psych) I did not eat for week or more at a time. It was like food did not exist at all. They were very mean to me and labeled it non-compliance. I hit the floor with no B/P. They just added more drugs. Go figure - no food in a person and the strong medication. That is life threatening. Off medication today (get really worse in all ways on meds.) I eat about a little over half of what I should. I am not sure what it is but I just don't "think" of food. Or a day goes by and I realize I have not eaten and I go to get food and 5 hours later I am online and thinking I never got food. I just go to the kitchen look around come back and do whatever I was doing. Some days I eat really well. I am about 100 pounds it vary's from time to time. Never once have I intentionally not eaten. I have even been mad at me for doing this but still don't get it down to eat to well. I do not feel hunger to much either and I believe I remember you shared that too.

To answer Estee:

I do agree that we all have a common goal and that acceptance of each others difference's even in the community would be helpful for all of us. I guess a way to say that is I can relate to Amanda some but that does not mean we are identical we still are different but we have common issues but its ok to not be "just alike" I hope I said that ok.

I want to ask of others as I learn to share more online that I may not always use the right words. It scares me to death that people may take me wrong and its the big anxiety thing for me I am trying to get over. Thank you Estee for sharing my letter. It was meltdown mode for me taking that step but I did and I am glad. I had to take that step if I wanted to start advocating for myself. (((HUGS)))

Learning to quote you all. Heeee

"I am back -- I am with Amanda -- I am VERY uncomfortable with the use of "illness." Autistic people are not ill. They are autistic. Down Syndrome people are not ill, they are people with Down Syndrome".

I agree the term is not a good choice but I am going to give what I just asked for and just say not the best choice of words but can we learn together to find those right words as we go along. I am sure if I write more, I am going to word something wrong. But I do not see my autism as an illness, I see it as - me. It is not all about issues. It is why I have my sense of humor, my artistic talents my editing skills, etc. and also why I have meltdowns and overstimulation. Its the ALL of me - the ups and the downs. My bad spelling too. I think. :)

I want to say that I have been helped from ASD people and parents. When I was trying to understand self-hitting it was a father who e-mailed me very helpful information on overstimulation and weighted vests and a list of things to try at home to help me out. I am very happy he helped me. I also have received help from fellow ASD people. Someone offered chelating too. (I did not accept)

Brian quote:

"I told him that I was on disability allowance. He told me that I was just using autism as a "crutch",

Brian. I am on SSI and been there done that. Working to me means lasting on a job about a week having a meltdown, police come in and off to nut house I go be drugged by people who no nothing of autism. Hitting the floor with no B/P. NO I will not go through that to fit a "stereotype" for those who have not been there, I can only say "experience it" then we can talk of why I am on SSI. And the same system who wants me working has put zero time into any assistance for my ASD. I feel no guilt today for being on SSI. I seemed to want to work on certain roadblocks of my ASD more than my system seemed to care. I have worked harder in the last 2 years for myself than the employee's in my system. I have been my own DR, researcher, caseworker, therapist's, teacher. as for those who chose to ignore the "real" needs of some ASD people -- they can (I cant say it or I will get in trouble) LOL

((HUGS))

Kathy - Aspiegirl

5:37 PM  
Anonymous -Brian- said...

Quoting farmwifetwo:

"That doesn't mean that it's ok to misbehave or go against societies rules... NO, and why no, still have to be taught and understood."

Again, who defines what it means to "misbehave"? Do non-autistic have the sole right to determine, by majority rule (ignoring any minority rights) how an autistic person must behave?

A few years ago, there was an article in Canadian Living magazine about Aspergers; in it a boy diagnosed with AS was seen looking at the sky when his soccer team was playing a game. Is this an example of "misbehaving"? Should he be charged with a criminal offense for this? Again, I cannot see how his actions can be treated negatively in any way, as he was just living his own life in a way that others (especially those on the soccer team) could not or would not understand.

That is where the term "empathy" comes into play; each side in any dispute can only empathize with the other side, and recognize the other side as being human--with neither side declaring itself as "right" and the other side as "wrong".

Life is too beautiful to dispute over whether a person is "behaving" or "misbehaving"; each person must decide for himself/herself what to do within the written codes; the "unwritten" codes of conduct are far, far too vague to understand, let alone enforce on any individual, anywhere...

9:36 PM  
Blogger Estee Klar-Wolfond said...

Farmer's Wife:

Thank you -- my arm is better since Benadryl. Not quite like the character in Hitch, but nearly.

Yes, I do think we all want to be part of the whole and what effects one member of our community, I believe, effects us all. When disabled people feel though that they are not treated fairly, however, we still have to talk about our own bias'. We have to become aware of how easily it is to be bias, without us sometimes even being aware of it. But yes, we are indeed all together in this.

I want to thank Kathy (Aspiegirl) for adding her contributions to this comment board as we have not had her before.

3:34 PM  

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