Some messages, either publicly or by private email, I may have spent several hours writing, re-writing, and re-writing again. I may even have sent them to non-AS friends, to ask for opinions on how to best phrase what I am trying to say in an objective manner, without sounding abusive or inflammatory. But then, I recognize and acknowledge my weaknesses and/or inabilities in the area of social skills, and recognizing that despite my VERY BEST efforts, there is a rather large possibility that it will STILL sound inflammatory, even tho I may have been crying when I typed it. So then I include a disclaimer, something like "I am AS, and I realize that this may sound inflammatory, but please know that I do NOT intend it to sound that way."

This disclaimer, does NOT mean, that I am "trying to hide behind an AS diagnosis, to justify being intentionally abusive to others." It does NOT mean that I am trying to avoid personal responsibility. It means, to me, that I recognize and acknowledge my weaknesses and/or inabilities in the area of social skills, it means that I recognize that despite my VERY BEST efforts, there is a rather large possibility that it will STILL sound inflammatory, even tho I may have been crying when I typed it. It means, that I did everything I could think of, to try to say what I wanted to say, to convey what I wanted to convey, and NOT sound abusive and inflammatory, but I recognize that my social skills are "inadequate", for lack of a better word. Basically it means, from my perspective, that I am trying, but not always successfully, to meet social expectations, but I am realistic and I recognize and acknowledge my weaknesses, rather than trying to use them to justify "bad behavior". The bottom line, to me, is that it means I want very badly to NOT sound inflammatory, and I am upset that I can't seem to NOT sound inflammatory even though I try, so I do my very best, and then because it is an autism-related forum or email, I mention that I am AS in the HOPES that the recipient will make the effort to understand that I REALLY DID NOT INTEND TO SOUND INFLAMMATORY.

If I wanted it to be angry and abusive and inflammatory, I would have said "Listen you !@#$%^&*() idiot! Who the !@#$%^&*() do you think you are? Show a little respect huh? Who appointed you God? You think you are better than other people? Get a grip! If you can't say something nice, either say it privately or don't say anything at all." But instead, I say "your comment appears to me to be disrespectful and inflammatory."

For those of you out there reading this, who truly believe that AS are the only ones with social skills difficulties, here are excerpts from messages I have found recently, posted on PUBLIC message boards, by people who are *supposedly* NOT AS. I would have also included the direct links so you can read them yourself, but I decided to show these people more respect than they have shown the people to whom they were directing their attacks. Now despite that I admit my social skills are "poor", to me these messages appear much more abusive and disrespectful than ANYTHING I have ever written, especially on a public forum.

"You shut up! How DARE!"

"Just curious...Does the fact that you are NOT NT require you to be rude, abrasive and abusive to people who are NT?"

"As the Mother of an Autistic child, you bewilder me sometimes. Your overall sarcastic and "assertive" approach to helping others in similar situations to yourself, completely astounds me. My suggestion would be for you to calm your jets a little bit and think about your words before you say them. Sometimes you come across as hurtful and mean, leaving alot of us with a bad taste in our mouths for your style of support."

"Is it possible to ask that those monitoring and contributing to this board behave with a minimum amount of consideration of others? I am asking this question of the moderators. I know it is not your job to be babysitters, especially considering the fact that most of us are parents ourselves and therefore must control, or at least mediate this same behavior in our own children."

"You are missing alot [name]. I'm surprised by your rude comments. Wow, you have alot of growing up to do. I will not entertain this type of ignorant ranting though. When you decide to act and speak as a mature and reasonable adult, please post to me. I will be happy at that time to talk with you. Until then, I will not join you in furthering this conversation."

"Could you possibly be any more ignorant and defensive to a "post" that is simply saying, "Please be careful with your children health." "This is not proven."

"Yet the whole time you say you are just trying to help people, personally speaking you cannot get more hypocritical."

"My opinion is that you should graciously leave this list... however I do not have any authority to get rid of you myself. This is something that only you can attend to morally!"

"You are being utterly ridiculous .... email you privately ...... we have a right to know who you are and why you are trying to intrude upon us all."

"YOU GUYS ARE DISGUSTING!
I have just found what I thought would be a great site to gain information about the gfcf diet and what I found disgusts me. Attacks on people's grammar and the use of "hon" and "sweetie". It is one thing to say someone is not welcome here but openly attack each other is ridiculous. I have seen a message board as bad as this one. I thought your purpose would be to encourage each other and to give advice, not to attack each other. I don't believe I can come here again."

===> My comment to all of the above messages -- I thought *I* had difficulty with social skills....

Here are selected comments from recent private emails to me, from several different people whose comments in public are included in those above, with my replies. Some of the messages and/or replies I have edited slightly, to protect the innocent, and in some cases to protect the guilty.

>>Even non-NT people can learn the proper social graces, Dana.

Oh WOW how I could comment on this one! I have personally been trying for over 3 years to learn "proper social graces" and so far I have been unsuccessful. The best thing I have found, is someone on the internet who will be patient with me when I have stupid questions. For some things, my goal is not social graces but simply to not be offensive. It is the difference between "trying to fit in" and trying "not to stand out". But I can tell you that from personal experience, I am about ready to give up on some things, because it is way too frustrating to try to learn something and spend hours and hours and days and days and months and months on it, and still be no closer to learning it and still have no idea what it is and even how to learn it. Overwhelming frustration is not good for mental health or self esteem. Should I just give up, or should I keep going and keep getting frustrated to the point of tears and believing myself worthless?

>>There are many NT people who are jerks just like there are many non-NT people, blacks, whites, fat, skinny, there are jerks everywhere in every walk of life...

This is very true, but there are also people who are trying to be "more socially acceptable" and being frustrated in the process, and then being judged by other people that they are not "good enough".

>>His behavior truly is not good enough.

>>I am simply suggesting that if the NT world is so overwhelming and that [name] can pick and choose which parts of it he wants, then a 'safer" place might be to not have to interact with us at all. Assisted living or hospitalization or whatever else is out there that doesn't require anything of you might be a better choice for him.

If your son one day grows up sounding like [name], maybe you will remember that I said at one point that maybe he is trying and not doing so well. And you can remember that you recommended a residential placement, over independent living. If this is not what you meant, or you think I just took it out of your context, then you can realize that this is how I understood it, I am not trying to "spin" it, I am telling you exactly how I understood it.

>>Sarcastic comments like ... [specific activity indicated], are simply uncalled for.

This is funny, I did not see this as sarcastic, I thought she really meant that she would [do specific activity].

>>These things are in fact extremely immature. I have no time for this sort of behavior.

But you apparently had time to reply to it. This is confusing to me.

>>I cannot condone anyone saying or doing hurtful things when they have the common sense to know the difference.

You have been hurtful and appear to have the common sense to know the difference. Howver, I also appear to NOT have the common sense to know not to send you an email.

>>If they do this on a group forum, then they should be prepared to be approached on the issue through the forum. It's as simple as that!

Yes true, but many people chose to ignore it. I should probably have done the same, and not sent you private email.

>>Having this label and this disorder does not give you (with your letter to me today filled with it's obvious insulting tone,

This is the "amusing" part, when I typed it I had the objective of NOT INSULTING, and I even asked someone I trust, who is NOT AS, to read it to be sure it sounded "okay". To me, it had no insulting tone. To you, it did.

>>yet shielded with the armor of AS) or anyone else free reign to deliberately hurt another person.

I tried very hard to NOT hurt you. You will probably not see this or understand, but it is the truth. However, I do not see that you tried at all, to NOT hurt those on the forum, and in public. At least I sent to you in private. You, apparently, believe you have free reign to deliberately hurt others in public, but I don't, even in private, and even when I am trying NOT to. This apparent double standard is very confusing to me.

>>I do have problems with people on this and other lists who use their disorder as a crutch for sending out disrespectful comments and remarks. Like it is o.k. to mask ignorance and rudeness with something like Autism or PDD .... shame on all of that!

I see your comments on the list as at least as disrespectful as mine sent to you privately. So we have a difference of opinion on what is disrespectful. Okay that can be true. But I try NOT to hide behind AS, I try to explain that I am TRYING MY BEST to NOT be disrespectful. But people such as yourself, who believe disrespect is "obvious", just simply do not understand how frustrating it is for those of us who think we are being "nice" but are apparently not. But even if it is true [which I do NOT believe] and I really WAS trying to "hide behind my AS", what is your reason?

>>Who gives you the right to pair these character flaws with a disorder that is so debilitating?

Well, by your reaction here, I will tell you "See?? How debilitating it can be? To believe I was doing my best to be objective and you still saw it as disrespectful?" It is not a "character flaw", it is honestly an inability to understand how my words will be viewed by others. You are free to disagree with me, but I live this and I don't know how better to explain it to you. And I guess I don't expect you to really understand it either. Lack of social skills can be debilitating, it is part of the dx criteria. However, perhaps in those who are NOT AS, it is a character flaw.

>>You should be trying to break the cycle and not act this way, rather than say things that you KNOW are not nice (your letter to me) and give an excuse as to why it sounds so bad afterwards. If it sounds so bad in the first place, and you are openly recognizing it, then why don't you rephrase it or not say it at all?

I rephrased it quite a few times, I sent it to someone to help me, I spent probably an hour on it, and still it is not acceptable to you. It was not an excuse, it was my last attempt to try to hope you would understand that I did not intend it to sound inflammatory. Next time I will not say it at all. Perhaps next time you won't say it on the forum either.

>>WE as a group definitely should not be helping them hide. I feel it is unfair for YOU to imply that I take this into consideration. Everyone should be held accountable for their actions!

Well, you are obviously holding me accountable. Can I not hold you accountable for being disrespectful on the list?

>>Being the attorney you say you are, this should not only be the cornerstone of your career but the very foundation of it's existence. Strange comments and thoughts coming from someone walking in legal shoes ..... I also wanted to point out that I do question your diction and grammar in regards to your profession. Your letter did not sound like anything I have ever seen an attorney write. Especially from one who claims to be so "formidable in a courtroom situation." Just a mere observation though, from working beside my [relative] for many years.

It was a "social" communication to you, therefore it does not sound like anything I would write for court. I have written many motions and things for court, and they sound MUCH different, because they are not social. Yes I am an attorney. Yes I graduated near the top of my law school class and I wrote a law review article and I passed the Bar Exam on the first attempt. But yes, I have no social concept. It is very frustrating. But whether or not you believe it, it is also very true.

>>You know, it's a two way street in this society Dana, so people at distinct functioning levels like yourself , [name], and [name] should not be given special privileges because you are on the spectrum ... that would be so very wrong. We have to be very careful of the example we are setting.

I try, but I also recognize my limitations. I am also trying to work on them, and the lack of understanding by people such as yourself, is very disheartening. I do not want special privileges, altho a little tolerance and attempts at understanding, especially by people with AS children, would be nice.

>>This group is about support and understanding.

You did not appear supportive and understanding to those people on the list, or to me here now.

>>It's about the sharing of ideas ... it's about helping our kids and families through this journey called Autism. I would love for those of you with AS to give us your thoughts and ideas on how to better help our children. I would love to have insight into how you think and feel. I would love for all of you to give us information on how to better teach and parent .....

This is the most confusing statement you have made to me. You want me and others to give you this sort of "insight", but then you flame me and others when we try. Do you wonder why we don't want to tell you in public, or even in private??

But here is my site section which includes AS comments on understanding AS issues, you might find it "disrespectful", but then again, a miracle might happen and you might find it helpful [that was an attempt at sarcasm, which I am also not good with.]

http://www.autismchannel.net/dana/parentin.htm#understand

>>but the information that is presently being filtered through ... sarcasm and abrasiveness ... well, I think I'll pass.

You are free to pass, and then so am I. I have this sort of conversation with parents occasionally. I guess it is just very difficult to be able to understand a point of view that you just cannot relate to. I don't use sarcasm unless I mention it, because I am generally NOT trying to be sarcastic.

>>I resent you calling me stupid because I apologized to [name]. I am far from it! Since when is admitting a mistake stupid?

I wrote "for another thing, you don't sound stupid or inflammatory in public and have to apologize." The "you" was a general "you", not YOU specifically. Perhaps I was not as clear as I should have been. I did not intend to call YOU stupid, perhaps better wording would have been "a person does not sound stupid" etc.

>>I will not touch that one any further though because that is a word I do not even like to use in my vocabulary. Please keep your personal attacks to yourself from now on.

Okay I will do so, even tho I did not intend it to be a personal attack in the first place. But maybe I should ask you to do the same thing, to keep your personal attacks to yourself from now on. But I won't, because you are free to do what you want.

>>If you are indeed on the continuum, please seek council for yourself or enroll in a social skills program to work on your areas of weakness.

I have, for three years now. It has helped quite a bit, but as you can see, I still have a long way to go.

>>It is this self defeating attitude which you seem to possess that will put the entire movement behind for everyone unfortunately.

I am not self-defeating, in my opinion, I am trying and trying and not giving up. But it is slow and frustrating.

>>Please try not to go through life blaming bad behavior and poor choices on AS.

My behavior may appear bad, but I am trying. My choices I do not believe are poor, except perhaps that I chose to send you an email, and believe you might be interested in hearing an AS point of view, and perhaps might be able to understand it more than most people I try to communicate with. I will not make that mistake again, at least not with you.

>>This is unfair to the rest of the many children and adults who really DO try to break the cycle and rid the world of the stereotypical stigma of Autism.

I try, but my social ability is my most difficult area. My concrete thinking, my legal ability, and much of my other abilities, are very good.

My final comment, is that I suppose it is not realistic to believe that those people who are NOT AS, would be able to understand just how frustrating it is, even after spending countless hours and asking countless questions, to try my best and still have my intent misinterpreted. So I will just say, in general, that I am NOT trying to sound abusive, because if I was, you would sure have NO TROUBLE seeing it! So read my messages 2-3 times, maybe even 10-12 times, until you can read it with an "informational" tone. Pretend you are listening to the 6 o'clock news, the reporter is saying something like "The Dow Jones Industrial Average rose 20 points today, and crude oil is up 20 cents per gallon." I am trying to sound JUST LIKE THAT.

As one friend of mine said -- "most of the time, you sound *flat*". This is a compliment to me. If I can sound *flat*, then I have done my job. It sure beats sounding *abusive* when I am trying to sound *friendly*. And apparently I am not at a stage where I can sound *friendly* or *nice*.

As I said on one message forum, it is the difference between "trying to fit in" and "trying to not stand out". I am trying to not stand out, not always successfully. I have given up on "trying to fit in", after all, I do need to keep my goals reachable and realistic.

I will end by saying this page is my last attempt [I hope I have learned my lesson this time] to try to explain MY opinion on social skills. This does NOT mean that it is the opinion of AS in general, just my own. But I have learned, the hard way, that it is apparent that most people will have no idea how difficult it is, and how frustrating, to try my best and STILL appear inflammatory. And even when I think I am doing the right thing and including a statement that I am AS, then I am accused of using a dx "belonging to those who are more debilitated", as a shield for me to be intentionally abusive. It is very upsetting many times, to spend hours of agonizing over each word for a message, only to have people believe I *intended* to be abusive, when that is the exact OPPOSITE result of what I wanted. So now, I am done with it.

Did anything on this page that is MY writing [not the writings of others which I copied], sound angry or inflammatory? Well guess what? With the exception of the paragraph where I used !@#$%^&*(), the tone in my head as I was typing this page, and also the replies I sent by email, was *flat*. I did NOT intend to sound angry or inflammatory!

If anyone, after reading this, has any ideas for me, so I can *try* to learn how to make myself understood better, as trying to be "flat and objective" rather than "abusive and inflammatory", I would sure like to hear them!

Thanks for listening.

Replies

After I posted this page on AS social skills, I received many comments on public message boards and by email, by both AS and also NT adults. Here are selected excerpts that I thought would be educational for people interested in this subject --

[I also did receive a few messages by email, giving me ideas on how to choose words and "tone", to appear more objective. Thank you to those of you who spent the time for me. I do appreciate it very much.]

~~~~~

I really like your "venting" article.

I feel the same way. There have been numerous things I have written to people where I felt they were quite nice. I have spent hours on some of them. Trying to be polite and tell someone how I felt about a specific situation. Only to be accused of "attacking" them...when that wasn't the way I saw it.

Even though I have trouble even writing about emotions - I can deal with it better than trying to discuss them with people.

You are so right, it is extremely frustrating!

~~~~~

I must admit I was quite surprised by other people's responses. I have known you now for what?..2/3 years? I have never read a single response by you that I would have deemed inflammatory. I have, however, read many many emotional and inappropriae responses to people. You cannot win them all, you do your best and move on. I have only reacted one time to a posters words and you helped me out on that one. Remember, people in general, find it much easier to try to "fix" others than to fix what is wrong in their lives. Your services to the community are invaluable to us all.

~~~~~

All your posts I've read so far were always carefully worded, very matter-of-fact and filled with information, factual statements or explanations rather than emotional outbursts. I do not recall you saying anything that can be construed as "inflammatory" or hostile. Maybe your respondents were simply venting their frustration at their own ignorance and lack of articulation? Maybe they just felt that they couldn't withstand comparison and tried to "get back" at you for being more knowledgeable and capable?

But then, I don't understand at all how and why ppl would deliberately try to hurt each other, unless acting in self-defense, revenge, extreme affect or frustration. What's the point of deriving pleasure from someone else's pain??

I've been trying to "get it" for a long time. The only answer that so far came to my mind is:

"No matter how much you care, some ppl are just jerks".

And, imho, the reasonable way to deal with it is to realize that this world and human race are far from perfect and to stop blaming yourself for other's imperfections and character flaws.

You are not worse than all of them, and much better than many.

~~~~~

One thing i noticed in your very eloquent "vent" was how most what they said was attacking a person, and what you said was "attacking" the issue. And it also makes me wonder just who is really as or nt , or perhaps some of those people have a personality disorder and are not nt at all...or maybe there really are no nt...orrrrr maybe nt is not something to strive for if that is the kind of person it describes.

~~~~~

I've been reading your messages since the old old #Autism Message Board. I would call myself NT, although many times I'm not proud of the label. Anyway, I always "get" what you're saying and am usually dismayed when someone considers your posts abusive. I think that many times, you contradict ideas people have written - and rightly so. Those people, then, feel convicted and humiliated. Instead of admitting that "yes, I was wrong" or "I hadn't given that point any consideration or thought this thing out enough", they attack you. In fact, I'd say that nearly every memory I have of someone flaming you is a direct result of you successfully communicating an opposite point of view.

~~~~~

I just wanted to say that I get so much out of your posts and you help a lot of people w/your site. You've never come across abusive in anything I have read. If people don't want others' opinions, they shouldn't be posting messages asking for it. You give us moms so much hope for our children. Seeing the improvement w/your own children, as well as what you yourself have overcome and cope with every day. It's unfortunate that some people can't accept others as they are, that's my biggest fear for my son in the future.

~~~~~

Hi,
I couldn't believe some of the comments you quoted and it just drives me crazy that people can be so two dimensional. I always find it frustrating that people make sweeping decisions about my son based on very little info. They will see him understand a very simple instruction that I give him clearly in a specific context and then look at me with open disbelief when I try to explain that he hasn't understood one word of their garbled gibbering. I have been told many times that I am rude for not trying to make him respond when they try and 'pet' him (he is quite unreasonably cute!). It is sad to realise that whatever strides my son makes the rest of the world isn't going to get any smarter!!

[Y]ou ALWAYS represent to me the sure and certain knowledge that my son should be defined but what he achieves and how he strives rather than his limitations.

~~~~~

I too cannot believe how mean people can be toward each other. I think we should all hold each other up in this little e-world of ours. Instead, parents tear each other apart and show little tolerance. Sure some people say things based on ignorance, but that is no reason to publicly ridicule them. Don't we all wish for such tolerance for our own children, both now and when they grow up?

~~~~~

I just read your site and "WoW"! All I can say is I went thru that experience ONCE and I was upset for days! How did you take all that abuse? I incorrectly used the word "dieting" and I was slammed for being uneducated, unsupportive of the gfcf site, and one person was so demeaning I could not even finish reading the post! I too have learned to stay away from opinions and stick to the subject. About social skills? Who really knows what is acceptable. Who decides this dilemna? Heck, sometimes my autistic son has better social skills and manners than alot of the NT kids around here.

~~~~~

[Okay I admit I did not put here all the embarrassing comments about how wonderful I am LOL].

This message is VERY GOOD and tells it much better than I ever could. Please EVERYONE read.

~~~~~

hi,
generally have left mineself in the position that am trying very well to limit mine posting to this list to subject matter relating to enzymes, their use, or other issues which have seen come up here such as chelation, yeast issues etc. today am going to divert from that rule for a personal reason.

perhaps it is mine feverish mind (103 F) that is creating this diversion, perhaps it is the need which am having to try to understand why it is so difficult sometimes for autism spectrum individuals to communicate with others, or why it is so difficult sometimes for NT (neuro-typical, otherwise known as: not-autism spectrum disordered individuals) persons to communicate with AS (in this post AS is used to describe autism spectrum individuals, not the AS=aspergers syndrome) individuals....

though there is no animosity held within this heart for most people on this list, am not intending to write for most of them. am writing for those who need to hear some of the truth living within this heart.... if you are not one of those persons, and therefore are not spoken to, it is not because am intending to be rude.. you just dont concern mine mind right now... as for those of the persons who am writing to... am not intending to be rude to you either... only trying mine best to express these thoughts that have arisen.....infact, if it not were for the children... our children... the AS ones... these words would not even bother to gather the strength to write... would be too scared to say anything if it not were for the tenacity of the late autm rose, that stubbornly clings to life in a season when all flora is laid to rest. our children are these roses in autumn. children are forever blossoming. we AS persons are sometimes like miners in a shaft weighed down by the tonnage of oppressive dirt that society has heaped upon us. sometimes noone is terribly interested in removing that heap. but the children, they are not far removed from teh earth and they do not mind digging. they are new, full of life and unable to stop blooming. their parents may feel crushed but the children go on blooming like the lovely, stubborn rose. sometimes am meeting adults who reach deep inside the spirit of themselves for the strength to bloom amid the dirt heaps and those adults (like dana) inspire mine heart to reach yet further too. it is for those children, that am writing today these thoughts on this one tragedy of living AS in society. it is the children who will have to learn to claw, dig and scratch in unison if we are to get out of this deep shaft. But you all are privy to these words (or perhaps you do not view it is a privy?, but such is the intention) are so because you are stuck in the collective called humanity. the burden we (AS persons) carry is a collective one. unfortunately, it is in addition to thepersonal load that every human being carries. the statement "everything starts with the self" by itself has some truth. but it is not the whole truth. it is the basis for a persons passion, but denies compassion. in figuring out a path for the whole people, it must be borne in mind that the whole people may not choose to forsake themselves. such things as justice and principle prevent teh whole people from becoming dispassionate. the condition of the whole then becomes the standard for the few. until ALL of us are free the few who think they are, remain tainted with enslavement.

what ever it is that is happening to mine friend-dana... it is killing the sense of trust that there is sprouting within this mind/soul for the "NT" world out there....

was again with eagerness waiting to look up danas new web pages.. and upon this page did find mineself:
http://www.autismchannel.net/dana/social.htm

there found mineself reading, and crying, and reading some more... not only crying for what has happened to dana, and other AS children and adults, but also having flashbacks of all the tears have shed, all the beatings, teasings, the pushes down stairs, the spit upon mine face-and blood upon mine body have had to wipe away .. why?.. because of just these types of things... what types of things?... is it misunderstandings? is it bigotry? is it lack of acceptance? mine mind cannot understand

when people send her statements such as:

****** >>I do have problems with people on this and other lists who use their disorder as a crutch for sending out disrespectful comments and remarks. Like it is o.k. to mask ignorance and rudeness with something like Autism or PDD .... shame on all of that!
>>Who gives you the right to pair these character flaws with a disorder that is so debilitating? ****

obviously could go on and remark on the fact that people with AS are not necessarily using their AS as a crutch but sometimes point out their "blindness" to certain things *such as social skills*, *communication* etc. as a way to try to help the "other" see that we are not TRYING to be rude, or insensitive etc. if we seem to be so... it is like a blind person who steps on your toes saying they didnt see you there because they are blind, so that you do not think they did it on purpose.... now unless the other was also blind, it may be quite easy to "see" that the blind person was blind.. but it is not so easy to see the AS.. especially through the internet.... so will only comment on something here and had a hard time figuring out exactly what woudl report on.. but decided on the rudeness part...because it rings in the ears often....

ok, have SO often been told that am rude, like the time the neighbour (we had never ever had visit us, never visited her house, or didnt even know her name!)walked right (without even knocking on the door) in our house with her children, in the middle of daughters private birthday celebration and i=mineself just sat there continued to watch the video (after only saying "hi", is that not what you say to people when you see them?, but what else is one supposed to say in a situation like that?) daughter had picked out to watch for her birthday.. later was angrily berated for being so "rude" and an "embarrassment" by mine ex-partner (who is a social worker, who upon the break up of our relationship said that i=mineself and the children amounted to "too much autism in one house")... that is just 1 example of where am told am "rude", "thoughtless" or "immature" (just to name a few of the 'labels' placed upon mineself).... then, upon reading about autism spectrum disorders... have read that the "professionals" who have 'created' the diagnostic criteria for these disorders seem to say the same thing.. that autism spectrum individuals seem to sometimes be viewed as rude, etc. ... so perhaps these words to that person writing to dana... it is not dana who links those characteristics to being as... it seems to be everyone else who is labelling us to be AS...(((also am wanting to say here that after knowing dana for over a year have read her responses to people online, have read her letters to mineself via email, and have never viewed her as rude or inflamatory) this leads this mind to think about social skills...... do NT people think that AS children will someday, somehow (short of experiencing a complete recovery.. and let us ALL send out wishes for such recovery for each as child) become adults who will NOT have social skills problems? if these children have difficulty with relating to peers now, will they not have difficulty in relating to peers at 20, 30, 40, 50, 60 yrs of age?

*****You know, it's a two way street in this society Dana, so people at distinct functioning levels like yourself , [name], and [name] should not be given special privileges because you are on the spectrum ... that would be so very wrong. We have to be very careful of the example we are setting. ******

wonder if this person has autism spectrum children? IF SO... does this person want "special priviledges" for their child? do the parents of AS children here want "special" IEP's for their child? do we (parents of Autism spectrum kids) not want the police dept. to be educated about AS characteristics so that our children do not get shot to death because they do not "respond" to commands, of "dont move", "put your hands up" etc. in the manner which the police consider appropriate? do we not want our children to attend "sheltered" work environments (where we feel appropriate), is that not a "special priviledge"? do we not want supported indipendent living *(where we feel appropriate) situations for our As children when they leave home (or we are unable to care for them), and is that not a "special priviledge"? wouldn't it be VERY WRONG to NOT seek these "special priviledges" for our spectrum kids...soon to be adults (yes, many spectrum kids DO become spectrum adults... and on this message board, along with other autism related boards there is a chance for people to interact with AS adults... welcome to YOUR future is all that comes to mind.... call i=minemind inflamatory if it pleases you [incase it was missed, THAT was mine attempt at being sarcastic, did me do well with that?] this is mine statement to the world out there that is so so often the source of so much pain for us AS individuals who are HURT so horribly for what? because of our disability.... disabled persons "rights" movement is not as old as the civil rights movement, or womens rights movement.... but surely we too must find a way to dislodge "ableism" out of the crevices of society as the other "isms" (racism etc.) are being brought forward movement in exposing, and dealing with )...

is it like this .... "specil priviledges" for "special" people... and if there is "special" people, then who are the non-special?... are they "ordinary"?....

clearly, "ordinary" person is a metaphor for something. none of us is ordinary, or put differently all of us (us being all persons in this statement) are special in some way or another.so what does it mean for people to defer to the voice of the mythic ordinary person? one of mine obsessions is reading... philosophy.. especiall michel foucault... a central theme in his work is the idea that how cultures define the "normal" or "ordinary" as opposed to the "deviant" or "special" both gives people their social and personal identity and acts as an instrument of political domination and bureacratic administration. ((if anyone has interest to read about this, please read michel foucault "Madness and Civilization: A History of Insanity in the Age of Reason (1973) )

what is distinct functioning levels? is it meant by those words that because a person is able to write well, reseach well, think logically well, calculate well, or whatever different skills we (autism spectrum persons) have which are our strengths that we then should be just as strong in other areas as well? because we actually are not. and who is? AS or NT.... personally, am quite proficient with the written expression, or so have been told, really am not able to gauge that mineself, but unfortunately none of you have been able to listen to mine mouth trying to speak... the words do not flow out as they do from the ends of mine fingers...you would not believe it is teh same person... that is what others who have heard mineself speak.... does mine 'inability' to speak well take away mine ability to write well? or does mine ability to write well automatically leave mineself in the position that it is expected of we to speak well too? ....and am having such a hard time understanding that above statement about functioning levels.........

surely mine kids have "high" functioning levels.... but that was not told to the little kids mother at the birthday party... a cold, gray dawn promised rain on the birthday of the sons friend. by afternoon, the clouds had been dumping their excess in earnest. decked out in bright yellow, rubber rain gear and armed with a present we could ill-afford, the pari of them trudged off braving the elements to join the party. ah, the pain on their faces and the silence on their return-the urgency they may have sensed in mine voice when asked them why they were not at the party. mine chubby little moon-faced son clutched a leagured package whose wrappings the rain had destroyed. it was a long time before this elder brother threw himself onto the sofa and wailed, "the lady told us they didn't want no rude wierd kids wrecking their party and why dont you just go home"... his thin little body sobbed to the rhythm of the rain. the younger was too shocked into silence to cry. mine mind soul could not cry, not then, and the mind dare not be angry. for am not going to teach mine babies to hate or bow to the cruelty of oppression.

finally, if am getting kicked off this list because have made such statements then so be it. that is the risk am taking, for expressing the awesome pain there is within, the sadness which swells up like a mightly tide, and lays \deeply heavy rocks of remembering, of re-examining, and identifying not ONLY with dana (for the pain within is NOT dana's fault, she did not bring it within) but with all AS individuals who experience the pain, the confusion, the frustration, that comes with living out our lives in a world where many contacts we have with people leave us (both, them and us) in a state of non-clear communication..... the tears that have been washing over mine soul, flowing out to cloud mine eyes, but not mine vision.... will wash away the pain too eventually.....that day that am able tono longer weep for mineself, or others hurt, but rather insist on writing mineself into a new book that counts all of humanity on its tender, warm, and colourful pages.

~~~~~

[And a reply to this message] --

i dont know why they do this. sometimes i think it is better to live apart and have nothing to do with brutality. then i think that if i did that, the bastards would have won.

These messages above, were WONDERFUL and much appreciated, please do not believe otherwise. But here are excerpts of perhaps the best email message I received --

~~~~~

>>I would like to say that I apologize for not seeing your side of things. I am saying this now at the risk of sounding "stupid" as you called it, but, as I read your email below again, I suddenly realized that I didn't really put myself in your shoes enough to fully understand your thoughts and perceptions.

>>I really am sorry if I hurt you with my comments. They were harsh and cruel. I wish I had not said some of them. I was angry and I admit that now.

>>I know now the problem for me is an acceptance issue.... I was not very accepting of you, or the fact that you ... battle things that come so naturally to me. In turn however, instead of displaying the very empathy I sought to gain form you, I myself fell into arrogance and anger. For this I must apologize. It was not my place to ever make you feel like less of a person because of your disorder. If anything, I feel much smaller inside for doing that. I was wrong.

>>I am glad these issues came to light though, because it is with this new kind of understanding that I will be better able to help my own child. Thank you Dana.

[And from a second message by the same person] --

>>I really thought things got easier once your child became indistinguishable in most ways from their peers. It is quite the opposite though. With age and maturity, our children become more frustrated with their inability to express themselves like the other children do. It is only compounded, when the very ones who should be on their side...their parents...express feelings of disapproval because "they should know better".....these have become my famous last words and words I hope to change.

>>Thank you for your insight and your powerful words...no matter how literal...I needed them...BIG TIME! I needed this kind of a wake up call....you just don't know how much. Your email gave me more than you'll ever know, and I hope we can continue to correspond with one another.