Sisters of the Road: What a Charity Should Be

The word ‘charity’ comes from the Latin translation (Caritas) of the Biblical Greek word for one of the kinds of love, Agape. This is the kind of love which does not seek anything in return, a kind of love that moves you to action on behalf of other people’s benefit because you really care about how they are faring. It is not an emotional love that needs things in return, and it certainly is not a greed for your own fame or fortune. Real charitable love, or agape, would never, ever seek to tear down, demean, dehumanize or in any other way harm the people it purported to help. Think about love and think about what I am saying and you might wonder how recipients of really decent charities feel about those charities.  Boycotty? No.

You may have heard a lot about Autism Speaks lately, because of the boycott, because we are so weary of being misused by them, because it is the opposite of a real charity; it is the opposite of what I am talking about when I talk about charitable love. It makes me want to tell you about a place I used to go which was quite exactly what I am talking about, and was such a shining example I can use it to explain the positive aspects in graphic detail.

Allow me to introduce Sisters of the Road Café, in Portland, Oregon.  I was a recipient of their charity long ago and when my fortunes improved I became more of a deliberate volunteer. My dignity and status were the same in both events.  This is important because it is the perfect example of what I mean.

Sisters of the Road does nothing about us without us. They feed homeless people and hook them up with resources and community. And the ‘they’ was ‘us’ for me both when I was homeless and when I was not. You could get a really good, filling, delicious, satisfying meal there for $1.25 and a cup of coffee for a quarter.  That was way less than other places. If you did not have the money you could sign up to help wash dishes or bus tables—or even be wait staff if you were that brave (not me) –for just one 15 minute shift casually to pay for that meal.  Also you could do another 15 to pay for a friend. Now that is dignity. The place itself was modest but nice to be around and nobody was all “move along.” For me it was a serious Godsend as I was not able to panhandle because too shy for that direct of social contact with strangers so a lot of times if I had a sore throat or something the singing in the streets thing didn’t happen, but I could get fed and treat a friend to lunch no matter what, in a place where we were welcome.

 [Image: photo from inside Sisters of the Road nowadays. The cafe has nice wooden chairs now and the lovely old wooden siding still. Two apparently African American men but they could be islanders or African of course, also they could be transmen, I don't know them personally, anyway they are in the foreground and the one who has my favorite red beans and rice in front of him is laughing uproariously with his head thrown back. The one with him is pointing at him with a big smile as if to say "gotcha." The one who is totally laughing has a powerchair which you can see the controls. Other diners of a variety of skin tones, gender presentations, ways of looking, etc. are throughout and the place and people just still seem as welcoming and friendly as I remember.]

Which brings me to this too: It was very rare back then to be able to get vegetarian food, but they always had it in addition to hearty meat dishes. They also had this kick ass Puerto Rican salsa, because one of the steady volunteers or workers was from there and knew how to do it. (People who really worked there for a wage or were steady volunteers did not act better than anyone or better than each other. You could pick them out only because they worked for longer than 15-30 minute stretches.) Nobody sneered at vegetarianism and said, “Beggars can’t be choosers.” I am sorry that so many religiously based organizations at that time (late eighties; I wouldn’t be shocked if it’s the same now) had personnel who liked saying that demeaning bromide when I shyly asked if there was peanut butter at all, but I wasn’t just being picky. My vegetarianism is long-standing and stems from deeply held personal beliefs.  And even if I were just being picky, why rub it in that someone’s life is hard if yours is a bit better and you are allegedly trying to help?

Genny Nelson was the boss of Sisters of the Road at that time and also later when I was more on my feet and came back around (she is retired now). She was there a lot and rolled up her sleeves and pitched in. She had been one of the inventors of it and when inventing it what she and her partner had done is asked around and found out what would be useful and good for actual people and what would not. I do not know if she had heard the slogan “Nothing About Us Without Us” but she sure did live by it and also create an organization that was founded on it, as well as the true meaning of Caritas, which is the root word for “charity,” which, as I said, is the Latin translation for Agape, rendered well in English as unselfish love.

So Sisters of the Road is earmarked for homeless people, many of whom are Autistic and otherwise neurodivergent, partially because a lot of the big alleged charities for Autistic folks do not provide much real life help at all, so good people who want to help others are accidentally throwing their money to the greed machine while the people they wanted to help are left floundering.

The straight up Autism charities that exemplify Nothing About Us Without Us are actually run by Autistics. These are Autism Women’s Network (AWN) and Autistic Self Advocacy Network (ASAN).  Autism Women’s Network is working on getting together some more on-the-ground initiatives, to get money and resources back to the right people who need it. Autistic Self Advocacy Network has created a sea change in the way Autistics are able to see ourselves and come together in action, as well as carve a place for ourselves at policy tables, even at the very highest levels. This has literally changed the world for me and many people I know. I think ASAN is also looking into a grants program. Both of these groups increase our dignity and well-being every day without wasting good people’s money lining greedy pocketbooks or financing harmful ad campaigns or research into preventing us from being born. Both of these groups are bona fide what a charity should be, and growing and doing more every moment of every day with your help.

Back to Sisters of the Road: Sisters of the Road, I salute you. The xxx symbol someone anonymously chalked onto the sidewalk to denote good food and hospitality in hobo code was apt and true and I will love you forever. Readers, if you give them a little bit of money too, there is no way you won’t be helping some Autistics, because so many of us are pushed through the cracks into poverty and homelessness at some point in our lives.

Here is their website: http://sistersoftheroad.org/ . Love!

Thank you for listening.

Love, Ib

Autism Speaks: These Mothers Want To Say

A mother who has worked with Autism Speaks and considered some of them her friends felt betrayed and sickened by the way they talk about her daughter. They ignored her. She declined to go to the summit. Please read what she has to say, here.

This other thing happened to her friend, one of her readers.

And here is my friend Kerima.


As for me, I think I have said enough for now. I'm hoarse.

Love,
Ib

Autistics Speaking Day: I Speak To Thank

Today is Autistics Speaking Day, which has a rich and sort of unfortunate history.  I haven't got long to write, but what I have to say is big and cannot be unsaid on this day.

The rich unfortunate history has to do with people going About Us Without Us, and when some of our own tried to say something about it, these 'do-gooders' seemed to express, to put it charitably, irritation. What they did not seem to do was listen, at all, even though they said they were doing whatever they were doing for our own good. We are doing this for your own good lalala hushup you ingrates we can't hear you... 

[Visual is the red-circle-with-a-slash symbol of crossing-out, being itself crossed out by a bigger symbol of the same shape backwards done up over it in rainbow colors. Superimposed on this are the words "Autistics Speaking Day Nov 1 2013" in writing suggestive of how monks illuminate manuscript.]

But I know many people who not only listen but go so far as to seek us out and amplify, and they are basically in three communities, and I am hoping to introduce many of them to one another at TASH if I can, or get started here, and on the other blog NeuroQueer, which others of them are more likely to read, and all of you, see how I switch pronouns here, but I do it on purpose for a change: all of you are beautiful, and I thank you.

You who listen and amplify are some of you parents whose children also are Autistic, and you wanted to find us, and you were not so busy trying to find ways we could not possibly be like your child that we should be invisible forever: so you sought and found us, and you are our beloved friends.

You who listen and amplify are some of you scholars, scholars with other disabilities, queer scholars and scholars of color, community scholar activists who did not just brilliantly theorize amongst yourselves about how we were not at the table: but you decided to get it started and do something about it, and you are our beloved friends.

You who listen and amplify are some of you people of practice, people whose life work is devoted quite literally to making sure the voices of some of the most vulnerable and invisible among us are able to be found and witnessed, and sometimes you are hardly seen, and sometimes you are mistreated and disrespected by bigots who call themselves greater and more acceptable things, but they are not. You are greater, and the greatest: you put yourself on the line for us and our voices, and you are our beloved friends.

When I first decided to write about this I was going to name your names, and I hope you are not sad that I did not, because for me the reason is so happy that tears of joy spill softly from my eyes now. In this small time of being myself in the open, and in community, I have met so many of you. The movement of Disability Justice even only when considered in the Autistic Community has so many true real Allies who are heart and brain and hands, and you who are reading this know you are my beloved friends and know who you are, that my babies would wake up and get hungry if I tried to list all your beautiful selves separately.

And anyway, we are not separate. We are joyously together.

Thank you, my friends, for caring that we speak.

Love,
Ib

Workarounds Are Our Friend

Some of the excellent answers on the last blog post about crossing the street, which I'll repost HERE in case you didn't get a chance to read the comment thread, led me to write this other article about workarounds.

[Visual is a graphic drawing of a hammer superimposed on a blueprint, with the words "Workaround Workshop" surrounding the image.]

Everyone learns differently, and when you're teaching things to people, remembering to presume competence, it sometimes comes to the attention of both of you that there is some kind of real block against that particular type of thing.

A word about presuming competence.

To presume competence is to give someone the benefit of the doubt instead of just saying, Oh, Alas, This Person Is Obviously Incompetent In Every Way And Practically Not Even Here. Because your person is more than likely there, and can hear you do this.  I talk about that some length HERE toward the end of this article. But on the other side, it also doesn't mean assuming anyone is a magic superhero who is terrific at everything. Nobody is like that.  Autistic people such as myself often have particular areas which are super extra hard for us, and we cannot get past a wall in them. That is what some of the commentators in that last post were talking about, and what I can talk about in this post, regarding time.

And it brings us to Workarounds. Workarounds are our friends.  Workarounds are what you come up with to get around, over, or some other kind of way past that wall instead of bashing your head against it.

I'll talk about myself.  Time is a thing I do not really get properly, despite the fact that I can appear to "tell time" although I am not very rapid at it.  I can read to you off an analog or digital watch.  I also always wear one because the alarms are helpful for me.  But I do not feel time elapsing in the proper way, and I am sure this is the case because I have interviewed many people about the real way time is supposed to feel.  From my perspective, time seems so arbitrary as to be fake, like a trick.  When I wrote THIS, I was doing what my grandmother called "kidding on the square," which is kind of joking, but kind of telling the truth.

It is not as if I was never taught how to tell time properly.  I was.  As a matter of fact I have such a deep and vast knowledge of time-telling pedagogy that I can teach teachers how to teach time-telling very effectively to a wide range of children and this is a huge part of my job.  It is just that there is a block in my brain about it for some reason.  I have other friends who are opposite of that, who can tell time better than clocks.  If you had a clock and Bridget who blogs HERE saying different things, you should fix your clock.

So now I come to the Workaround.  Whatever it is that you or your kid just can't seem to get past, be it crossing the street without a light because it feels like mindreading cars, or having a feel for time, there are ways around it.  Come up with plans and you will be golden.

For me, I get that commercials are shorter than movies, so I have some sense of not saying "I'll be back in a minute" if I am going to do something that is more like going to a movie than the time span of a commercial. And a ball game is longer than a movie, so. Another part of my workaround system is technology.  I have a lot of gadgets helping me, alarms, talking computer, etc.  People help me too.  Since I am a professor and people look to me to be in charge of when break-times and things are, I openly tell them it is OK to remind me, and I tell them why, but I also use great software for the iPod like the Visual Timer that is quick and easy to customize and set and doesn't make noise. In airports, I alert the flight personnel that I am there so I don't space out too much and miss the flight. They are very kind about this.

Another thing I do is try to be early rather than late, but to be honest time is still a large source of anxiety since it is a thing that I am relatively clueless about. When I get the chance to be interdependent about it instead of trying to rely on all my own self, I am much more relaxed, and that's OK today. It wasn't always. I wish I had learned this younger.  This is different from learned helplessness.  I am not helpless; I am getting help for myself in real ways that will really work, and in turn I am helpful to others in other ways that play to my various strengths. I just no longer have to injure myself out of false pride, because I now understand that I don't have to try and act "perfect" all the time, which just breaks me down and makes everything worse.

So if you are a parent or a teacher, you might be able to help younger kids who are Autistic find out workarounds for themselves based on checking out what they are good at and what they are interested in and tying that into a way to get success working around the problems of what is not happening for them, which in my case is time and in some other people's case it might be recognizing faces or what not. Or crossing the street.  You could decide to really always cross at lights, or when there are no cars.  You could live in a neighborhood with either very busy streets (to ensure lights) or non busy streets (to reduce likelihood of cars) if that was your lifestyle.  Things can be worked around.

If you are an Autistic self who is trying to find workarounds for your self you can ask trusted friends to help you make a list of things you are good at, in case the topic is stressing you out. They might be able to see connections that will cause you to come up with excellent workarounds together that would not have been thought of alone.

Some friends and I have a whole website called We Are Like Your Child which is largely devoted to workarounds, but also partially just to showing that we who have pretty insurmountable sounding problems are willing to go out on a limb to talk about them now because we get the message that the successes we have fought for make our lives seem unattainable to some people, on behalf of their children, who are having a hard time now. But we were like that, and we wanted people to know.  The link takes you to an essay of mine because I know I wrote an essay specifically about workarounds for the social and sensory issues surrounding why it is so hard to go to a party.  I know if you click around there on that site there are other great workarounds mentioned like ways to organize.

Everybody, I want to thank you.  This has been great. I hope more people will ask questions like this and I also hope more and more people will share their own experiences in the comments because our experiences are different and similar and all very telling.  Experience is the richest place to find questions and answers and it also makes our community strong.

Love,
Ib

O & PS So this is my invitation to put your favorite workaround into the comments below!! :D

Crossing The Street With Neither Guard Nor Signal

Dear Ibby, 

So I have what should be a really simple question to answer, and yet...maybe not. 

It's about crossing a busy crosswalk without adult assistance. My 12-year-old son just started middle school; to get him there, I drop him off at a busy corner with a crosswalk. Only difference from elementary school is that there's no crossing guard. 

This morning, he was the only one in the crosswalk, and with my "cross safely" ringing in his ears he...stopped. Waited for the cars there to go. They waited for him. The drivers started waving him across. But he, of course, was not looking at the drivers. He was just waiting. Honking started. I finally rolled down the window and said, "OK, go ahead, safe to cross!" And he, without looking first to be sure nothing had changed while I said that, darted across. Something about the whole thing worried me. 

My question then: How do I teach him to look INSIDE the cars to see if the driver sees him, if the driver is waving him on, if the driver is NOT seeing him and is about to drive forward, etc.? This is going to come up when he starts to drive, too. Is there a simple way to address this tendency to just think, "the rule is that I can go when there are no cars at the crosswalk" or something like that, and not to adjust depending on the situation? Most mornings, he won't the be only one crossing. But when he is...I need him to be safe, and I can't think of a single simple "rule" he can use; the situation is always different, and I won't always be situated so I can direct him from my own car. Ideas? And THANK YOU.

Lori 

[Visual image of an official DOT crosswalk sign, person in silhouette crossing street on yellow background]

Dear Lori, 

This is a great and useful question that is the opposite of a simple question! You are right! Should be: isn't.

So I wracked my brains trying to remember how I found out about looking inside of the car to see if they can see you and whether they are going to run over you about it, and could not do it by myself. So I called up the person who would have taught this information to me! (This is the key to good research skills, by the way. If you know who knows, it's as good as knowing it yourself.)

My mom said it made total sense to not want to be embarrassing him by being the hand-holdy mother all draped over his business if there are other kids around, but when there are no other kids, this will work better with you not in the car, because he can follow your head with his head and hear your words up close.  You narrate with him what to do, always using the same words, never changing it up.  "Look left, look right, look left again. Are there any cars? Neither side? Safe to cross. A stopped car nearby? Look inside. Can the driver see you? How do you know? Smiling and waving and not going? OK to start. Now look back right. A stopped car? Can he see you?" Etc. In the car on the way there you can do this decision chart. He will know it in his head when he is with the other kids and you can hide and watch from your car to feel better, but he should get it pretty soon and get comfy.

When my mom was telling me about the above I started remembering it, the rhythm of it. As a matter of fact my mom had to get off the phone pretty quick but I suspect she stealthily slipped a bunch of good manners information into these rhythmic safety algorithms. (As you are reading this, Mom, note that I gotcha.) Because I have a dim memory of this being around the time I learned the thank-you wave that I still to this day use while I myself am driving, or when I do have the pedestrian right of way on a crowded urban turn lane and the driver did smile and wave me through, but it is still nice to acknowledge not being run over.

I am a very safe walker and driver now, and polite, and also very good with algorithms such as who goes where on a broken signal light. I am, astonishingly, not the one who gets confused in such situations.

Neither will your son be.  There is a bright side to all of this.  :)

(In other related news: Another thing I have to remember to this day is how to act like I am trying to cross the street instead of trying to randomly loiter in the general vicinity. This is another issue I don't know if he has, but it might be a thing.  Look purposeful about I Am Crossing The Street Just So You Know and the car drivers will be more likely to Take Notice.)

Write back and let me know how it all goes?

Love, Ib

O and PS: If this is not quick enough, remember that you can buy time by rousing the neighborhood and agitating for a traffic light.  Let me know if this is something you want to do and I will put you in touch with some people who have done it and know exactly how to make it happen.

 

Media Throws "Autism Parents" Under The Bus Again

Another incredibly self involved person without a moral compass tried killing her kid. This time it didn't work, thank heaven, but members of the media as well as key "parent" bloggers are as usual taking the opportunity to present the grisly, unnatural and horrific acts as somehow logical, to further their complex and spiteful agenda.

They are callously using these troubled criminals, in other words, and calling them "typical parents" doing "understandable acts of desperation" at the expense of real parents everywhere. Don't fall for it, and don't stand for it. Speak out.

Thought experiment: You hear a news report that a promising young high school football player with a scholarship to Notre Dame after graduation was gunned down in cold blood by his mother. It comes out that she had called, even taken time off her minimum wage job so she could try in person, begged at least seven times for more food stamps because Jim's training schedule started making him so hungry she could no longer afford to feed him. They ignored her. She is quoted as saying she saw no way out but to kill him: Julie had known hunger, and vowed her boy never would.

Now. Are we going to be deluged with crap blaming the boy for being inconvenient, or will we be shown a lovely pic of him as a heroic young life cut short?

Will she be painted as society's victim, one of us? Or perhaps...someone who killed her own child: a child-killer. The very worst kind of criminal we can think of. She's poor and the kid was not disabled, so...

I'll stop with that. But you see why I'm so sick. Wrongness is happening on so many levels and not just to Autistics. They are doing this to our parents, and our whole civilization.

Please stand with us and say NO in any way you can think of, every chance you get.

Evil is NOT the typical response to being under resourced. We cannot allow this myth to take hold and dig deeper cultural roots.

In short: we need more resources and that is the truth. But most people would never kill an innocent kid, no matter how hard life is, and to say otherwise is a flat out lie.

Thanks for listening.

Love,

Ib

Letter From Devoted Phoenix, Part 3 (Important Note)

Dear Readers,

This morning a thing happened in an asynchronous online thread between two of my friends, and it was this: one of them liked my post answering Devoted Phoenix, which you can click on here, and said so a little enthusiastically maybe, but you know, supportive friend and all... The other friend, who is also super supportive, took this personally, what the first friend said, took it as a kind of indictment against those who do not or cannot exit stage left.

Both of these people are people I've spent a good deal of time with in real life and seen them with their kids so I know they are *absolutely fabulous parents* as well as this: when I say they are my friends I do not mean "acquaintances."  I'm using the term the opposite of loosely.

So I cannot possibly let go the fact that my answer had in it the power to cause this kind of hurt due to the fact that I did not write part of it adequately.

I must fix it.  Important note:

[Photographic image here of a hand holding out an envelope stamped with a giant, red, official-looking seal of the word "IMPORTANT" in all capital letters with a red border. It is not letter-sized, but rather note-sized, the envelope.]

Here are some things I absolutely did not mean under any circumstances.  I did not mean to imply that all the problems that there are would be resolved by doing a geographic and exiting stage left, and by extension I super mega extra did not mean to imply that families for whom this is not an option or the best solution are doing a bad job in some way.  I mean things very, very contextually; in that answer, I was talking about situations like the one being described in the original letter written by DP, which is linked here.

In real life,  it is difficult in many places to get transferred to another school, or granted the ability to homeschool (if you wanted to go for that) and it would be especially difficult if there were no evidence that the school setting itself was part of the problem, or the bulk of the problem.  However, from the evidence in the letter I deduce it will be very easy for DP's family to show (even almost *prove*) that the social scene at this particular school is a Big Giant Issue if not the primary and immediate emergency in her daughter's life right now.

Also if any services are being used that are actually helpful, it is not easy to keep these services going in many states or districts while pursuing other placement options.

What I am very sorry about here is that it seems like I made exit stage left sound like: 1. the solution to everything, which I totally disagree with, because it's simply not true; and 2. it's just ever so easy, which was hurtful to my friend.  The first is pretty embarrassing to me as a writer, but I'm extremely sorry about the second thing.

I exited high school using a technique that is probably very traditional but that I do not recommend. I am going to say a little about it here to try to rectify the pain I caused and also I hope the book comes out soon wherein I have a chapter all about my schooling years, because it details this situation much better.  The book comes out this Fall.  I will let you know.

So: the method that happened for me was extreme truancy because I could not bring myself to go in that place. I would get ready to try every day and I didn't put this in my chapter and I still don't know if my parents know this so it's a new piece of exclusive information for you, TGN readers.  I always took the bus to the correct bus stop for that high school and then took to my heels, even if the places I would ultimately end up that day were several miles away.  Always.  I did try.  But I could not, like I said, get myself in there.  Although sometimes I sat in a tree on the grounds because I did love that tree, from which I could see a fountain.  Anyway.

I became expelled from that high school which is the horribly non-easy method my parents had to deal with, the news of my extreme/complete truancy hitting them out of nowhere as I had not been able to communicate my distress to them properly because I did not have the words.

Then my parents fought very very hard to get me placed in an alternative school. This also was not easy for them.  Any problems I might have had there would *not* have been solved by a geographic because it was a very good placement, so these problems were solved in *other* ways.

I am sorry for the misunderstanding.

Thank you for listening.

Much love,
Ib

Letter From Devoted Phoenix, Part 2 (Answer)

Dear Devoted Phoenix,

Here I am, back to answer this letter you posted, which I link to here in case anyone missed it.

My friends answered in the meantime, and I loved what they had to say.  Sorry for the delay on my part.  I couldn't say anything in the moment because I was overwhelmed with the remembrance of things past, of the time when it came to pass that I couldn't, could not, endure where I was at school for even a moment longer.  It started to start happening at around your daughter's age.  We tried some things, but the TOTAL ACK... well, while trying to make sure I could remember how to help avoid that, I had the big giant I want my Mommy in front of everyone.

So glad my mother said what she said, and the relief I felt on hearing it when I finally got hold of her today--because it did not get fixed at quite that young an age for me, so I didn't remember what to say fixed it--was unbelievable. She talked to my dad about it and they remembered what really helped.

Do a geographic.  When the other kids have become being like that, nothing will stop them being how they are being and doing the doing of those ways.  It has become the social milieu and it is not up to any one person to change a culture.  So you can leave.  Exit stage left.

[Here is a photo of an actual old tin theatre sign, which says Exit Stage Left, with an arrow pointing left, and the iconic Tragedy and Comedy masks appear to be hanging from the top corner.]

The exit stage left, ahhhhhh.  I think this changed my life.

It can be another school, it can be homeschooling, this is not something I can say, but of this I am sure: one cannot live in a social situation in which one cannot live.  Escape hatch!

But this brings me to the second thing, and I do believe I can really say this to you because you seem like the kind of person who can understand and make it happen.  When I said I couldn't say where to escape to?  It's because I don't know your daughter, and she seems from your letter to be old enough to be the kind of person who would have something to say about that, and nothing about us without us, which you totally get, and that drew me to your letter.  I hope you are in a location where she can find others to hang out with who are cooler, and she might have some ideas about where this is likely to be for her.  Or, she might not.  But get her out of that hellhole, because at least new people will be new and not have a toxic history together.

One of the things that also felt really good to me as I started growing up, by the way, was political activism... we didn't have the Autistic Community back then because I am really super old, but I loved trying to subvert the dominant paradigm about other injustices going on.

Do you think she would like to write to me and get in touch with some older Auts online maybe?  Help create a website for kids her own age who are interested in what she cares about, to chat?  Lordy, I wish we'd had the Internet.

Thinking good thoughts for you.  Write back and let me know how things are going?

Love,
Ib

Letter From Devoted Phoenix, Part 1 (Letter)

Today I got this beautiful letter in the e-mail. The writer offered that I should "feel free to excerpt bits if I decide to respond," but the writing is so full of truth and the clarity of the murkiness that is in our lives...it seems to me the daughter in this letter is so very well understood by the writer, and so well understood also by me, myself; and I did not want to remove one word of this letter, because I also believe that the readers will understand the writer and the daughter, and may wish to answer.  And I want to talk to my mother.  So, readers, I offer you this letter, in its entirety, which contains important and thorny questions that are central to so many of our lives.  Dear Devoted Phoenix, I thank you for writing, and will answer this also myself, in a column coming soon.  Thanks everyone!  Love, Ib

Now here is that letter itself:

Hi there,

My daughter is eleven and she was diagnosed with Asperger's this February. I have a hard time being brief, but I'm going to try. We didn't consult for help until she was clearly having an abysmal time at school with other kids and literally believing she was an alien who wasn't "made" for family and friends, kindness and respect, and wanted to die of loneliness and the despair of not being able to do anything right or alternately force her gregarious social self to become a loner who used her isolation to protect herself from the whole business.

At five, I sent my daughter to an alternative school with a child-led pedagogy and a beautiful community-based learning environment. Lots of opportunities for freedom and responsibility, leadership, creativity, etc. I didn't know she was on the spectrum, but I did know she had a strong personality and that she was likely to be singled out for it. Part of my hope was that she would not be labelled and pathologized at this school, but rather supported in developing her strengths and the necessary skills to use her personal power to be a leader without being a tyrant, etc. The school has done a beautiful job of focusing on her strengths, but... I wish I'd had more information about her challenges sooner.

Now, I have a child who thinks she is a freak, who contemptuously rejects the forms that consideration for others takes, as well as not quite grasping why these things are important (which, being at *least* half-aspie myself, I understand) OR who hates herself for not doing the things she knows she could be doing to make relationships better and feeling deep shame and anxiety as a result. Sometimes it feels like she apologizes for simply existing and being human with human needs.

I want my daughter to be herself and be okay, I always have. I want to celebrate her creativity, her caring for vulnerable beings, her beautiful voice, her awareness of deep subtle things, her sensitivity, her earnest efforts... and I want to see her less crippled by the anxiety and shame of trying to navigate the NT social world and failing. She tries so very hard, she does what seem to be the "right" things and still it doesn't work. She doesn't trust any "help" to actually be helpful for her. And my heart breaks because I remember my own struggles to grasp the importance of manners and social graces, I remember how much it made me feel like it was all about making myself small and not asking for anything, not expressing my truth, my feelings, my needs, pushing them so far away that I couldn't even identify them myself because otherwise they would overwhelm me with their urgency and sabotage my efforts to fit in, to be safe, to stay out of trouble. I was an adult before I made any peace at all with these things... but I survived because I am academically gifted and creative and my special interest is human emotion and behaviour itself. My daughter hates academics, loves art, and really doesn't care why people do what they do.

I have no idea how to help her. Part of me wants to help her learn the NT social rules, not based on good or bad, but just on the kinds of responses their presence or absence evokes in others (myself included). I want to support her to be able to make her way in the NT world... and, I also want to be sensitive to her needs for integrity, for the dignity of her own being. I want to let her be different and celebrate that - but at 11 she sees nothing to celebrate in being a freak as she puts it, and none of the strengths I see in her matter one iota to her in the face of her difficulties. She hates her Aspergers, hates herself by extension, and experiences the entire world as mean and full of personal insult and sabotage... Trying to show her that there are things she can do to help make things better with other people just translates in her heart to the belief that I'm saying it's her fault they are mean to her. In those moments, she believes that I think she deserves it. Which I most certainly do not. I don't know how to help, and I don't think she's ready to try to understand why other kids respond to her like this. It just hurts too much.

It's so hard when we are told (and I know because of who I am) that she can learn to fit in and be the "normal" she so desperately wants to be... and yet trying is such a complex proposition for her, so full of earnestness and anxiety and franticness and shame. And I know that, if she is anything like me, the world will eventually see her as normal, expect her to *be* normal and know all the things instinctively that "normal" people know and do... but inside she will never quite feel she belongs, when she is tired and stressed, she will still transgress the rules and be seen as socially inept, long-term friends will still tire of her innate processing of the world through her own experience, her use of sharing to connect instead of listening, and eventually object loudly or leave. And she doesn't have the self-containment that I did as a a child and now. I'm not my mother and I haven't forced my daughter into a box of stifling social appropriateness or taught her that intense emotional distress gets punished or ignored. Maybe that was a disservice, as her peers certainly have different ideas about those things... 

She is seen as normal, but spoiled and childish, defiant and impulsive. Sometimes, I wonder if it's better to be seen as one who is not "normal", who is atypical, who has a reason or an excuse to be different, but then that often translates to sympathy for a broken thing, and she is not broken, though she feels that way. Compassion is in short supply somewhere lost between unrealistic expectations and dismissive pity. I don't which is better/worse.

It's taken me years to get over myself in my reaction to her hostile and "disrespectful" behaviours to understand her rage as protective, to learn to reach beneath it to touch her vulnerability, to discover her distress, to name it so she knows she is seen, to hold her in it. Except now, she has learned to reach her vulnerability herself and own it, and she has no skills to manage her anxiety, her shame, her hurt in a world that doesn't see her, doesn't respond in ways she experiences as caring. And she doesn't want to learn the skills she is aware that kids her age already know: it's humiliating for her. So she gets angry and resentful again. 

I try to get help, but I, too, am reaching a point where I don't find the help helpful. I am torn between wanting to help her find the motivation to learn the things that could help alleviate some of her social distress (because when she wants to do something, she is very capable) and wanting her to have supportive help that doesn't try to change her, to cultivate places that can accept and help contain her emotional intensity. She gets too much information about how everything that matters about her is wrong and in need of reshaping. She feels like a baby because she can't do those things. And, I'm also a human being trying to manage my own sensory overwhelm, my own needs for consideration, just like the rest of the world she has to deal with. I can't always accommodate, and I'm not convinced that being accommodated all the time would serve her, either.

It's very confusing and heartbreaking and frustrating. I suppose my question is, with a child who has the potential to "fit in" with the NT world, and who very much wants to but tangles herself in knots trying... do I pursue social skills training and help her shift how she presents herself (which she doesn't really want to do) or do I encourage her to be her Aspie self when on an every day basis, even at home, her self-expression generally gets lost in reactions to her delivery? I want people to be able to see all my daughters wonderful gifts... I want her to be able to see them... but right now, they are so obscured by this pressure (inside of her and out) to get it right. And she's smart enough to have figured out that most kids just would never accept her if she continue to approach them without fundamental changes in how she behaves that really go deep into who she is or isn't. She rebells or tries to mortgage her soul to pull it off and neither gets anyone anywhere.

So much for brevity. Thanks for sitting with me long enough to read all of this. Feel free to excerpt bits if you decide to respond.

Devoted Phoenix

Got Your 6

6 is my favorite number.

Also, there is another meaning.

Ground rules alert: this is not a forum to talk about how we feel about war.  This is about the lived lives of people, of the veterans, and the fact that many people who go to war acquire disabilities, and thus become disabled, and we who are disabled already know how to be disabled, and we who are family members of disabled people already know how to be family members of disabled people.

"Got your 6" is a military translation for the idiom "Got your back" which came about because of WWI fighter pilots' picturing of the airspace round their planes as being like a clock, with the nose being 12 (so the tail is 6).  Here, watch this PSA:

Now, they don't go into the disabled part of it, but it's there, and we all know it.  People lose limbs and get PTSD, and we know about that stuff.  This is one of the giant reasons why we need to have celebrities and organized campaigns to make sure veterans can get jobs and they and their families can be taken care of when they get back.

They don't know how to be disabled already, or necessarily what is the best way to be supportive family members.  We do.  We can help.  We can have their 6.

There's one more thing about this.  Goodwill is one of the sponsors, so there's a good side effect of our supporting this particular campaign.  Because disabled veterans have not been disabled the whole time, they will not likely have been conditioned to take kindly to the practice of sub-minimum wage payment that goes on in Goodwill shops in states where that is still an available legal loophole.  So there will be fresh new sets of eyes on that problem: angry eyes, and many.  This bodes well for change.

And I'll say one last thing: we may sometimes unfortunately tend to think of life from a scarcity model, like this: if veterans get jobs, there'll me none left for me, or for my child.  That's not really useful, or really real.  Campaigns that create jobs boost the economy, and, by definition, create jobs.  Also, campaigns that call attention to societal needs call attention to societal needs, which causes an aura effect causing attention to be pulled toward adjacent and related needs.

The ADA was not signed because of the people in wheelchairs who were relatively socially powerless....

If we think generously, we think better.  We build coalitions.  We look for commonalities and in our social usefulness we live lives of greater fulness. Let's be there for the veterans and their families because we have knowledge and skills that may be of service in untapped ways.  And in so doing we may make new friends, friends whose knowledge and skills may further the good of everyone.  And these new friends may find themselves serving their country alongside us in exciting, novel ways they could never have imagined.

Love,
Ib

O & P.S. Here is the website to check it out: http://www.gotyour6.org/ . I had forgotten to link to it and Andrew Dell'Antonio who is extremely awesome gave me the reminder!  xxoo

We Are Like Your Child: Socio-Sensory Distress

Dear Readers:

This link will take you to an article I just wrote on our collective blog, We Are Like Your Child, masterminded by my friend the longtime activist Kassiane A. Sibley so that a wide variety of adult Autistics and friends with other disabilities could really go into detail about some of what is hard, and what we do to work around it, in order to help others get ideas from our experiences.  Thanks very much for all your support. 

Love, Ib

Dealing With Family's Clueless Questions

Dear Ibby,

First of all, I'd like to say I am a big fan of your work and you first came to my attention when the Thinking Person's Guide to Autism published your essay "A Person is Not a Function."

I have an almost 4 year-old little boy on the spectrum. He was officially diagnosed a little over a year ago. He has a consistent vocabulary of about 8 to 10 words and seems to be really learning a lot at school and enjoying himself. It's very clear he understands a lot of what is going on. We have our bumpy days, (as does everybody), but overall life is very good.

I'm actually writing b/c I need advice for how to handle some neurotypical people in our life. I feel like most family members (on both sides of the family) are very fixated on the "talking thing.' I hear a lot of "is he talking more?" "When will he start talking more?" Every time I share one of his successes at school or home I hear "Does this mean he'll talk more?"

I don't want to make it seem like I'm anti-talking or that I've completely ruled it out for my son's future, but I've broadened my ideas of communication so that I don't see lack of talking as lack of success. How can I get our family on that same page? I feel like they still have a lot of pity and fear feelings around disabilities/differences that they need to work through.

I've tried leading this conversation gently "You might like this book" "You might like this documentary" "He might never grow up to be a talker and if he doesn't that's okay." Nothing really seems to sink in for long. They slip back into "talking is the default way to communicate/be" very quickly.

They are all long distance and don't get to see the day to day triumphs and progress. Do I give them more time to process because they are more removed? Do I keep on the gentle path? They (usually) don't talk about this stuff in front of my son, but every time they talk this way it hurts me (even though I realize this is not about me) and leaves me with the feeling they can't fully accept him b/c they are holding out for something "better." Do I just flat out start telling them that this is hurtful?

I'm usually someone who tries to avoid confrontation, but I'm starting to feel that it might have to be done.

You always seem to deal with everyone and their questions with such wisdom and compassion. Any advice in this situation?

Thanks for everything you do,

Just call me

"Dealing with Family Matters"

Dear Dealing with Family Matters,

(This took me ages and ages to answer, not least because I could fully answer one layer but not the other, or not to my satisfaction. Now I have been to Syracuse and can answer better along both axes. Thank you so much for your patience, DWFM!)

Thank you so much for writing, and for trusting me with this problem.  I have been thinking about it for ages, and it is a very real problem.  I will speak directly to you, and I also believe you have many unseen friends out there experiencing almost exactly the same thing, who will relate to you.  Maybe they will answer this post and you can become friends.  Support of people who know first-hand what you’re talking about is a wonderful thing.  I speak to you all, really.

What I will do is speak from my brain and experiences and observations and also from my heart, and start with the adage my wise friend Souci taught me when I was a whelp: “Take what you need, and leave the rest.”

The first thing I want to say is that I was flapping when your focus of sight was about how often they mostly did not do this in front of your son, showing both that you are thinking that if they did, he would notice and care (instead of being incompetent) and also that you think his welfare is utmost, because you are an awesome parent.  And you are trying to be gentle with your family and give them the benefit of the doubt.  That’s actually a really good thing too.  I’ll say more.

When you say it is not about you, I want to say it does get to be about you, sometimes, because you are a person and you are hurting.  That is reason enough, but there is more.  So.  This: you are clearly not the kind of person that makes everything be all about you as a general characteristic, which buys you more it-gets-to-be-about-you-for-a-change-now.  For one thing, none of the text in your letter was lengthy declarative proclamations on the topic of what a giving giver you are, always giving, never a thought for yourself (a specific type of language use which I have noticed in my travels seems almost invariably to be a kind of code, a type of opposite-speak bafflingly concomitant with self-involved action sequences).

Sometimes people like you who actually are giving people who think of others first need to hear a logical reordering argument in order to believe that it is OK to defend their own selves from hurt.  I will use a quick argument from analogy in the form of a potentially random sounding metaphor.  I trust you will see what I am doing right away, so I will keep it short and not belabor it.  Here goes:

When people hurt my mother, especially relatives, I always notice (even though she is fabulous at hiding it, according to the rest of the world) and feel it keenly, and am greatly distressed.  The less I can do about it, the worse I feel.

There.  I believe we have incontrovertibly established that it is OK for you to deal with the issue even though you are the primary person being hurt by their words at this time.  :)

(And I stopped writing here for a long while, because I knew I could only really answer half the question, and now I will continue…)

There are two axes of what to do. One is internal and one is external. The external I learned more about at Syracuse ICI Summer Institute (where I think everyone should go) (and I don't think you have to wait 'til summer to check them out) and hence can now finish this post.

Internally, I can only hope this information helps you to gird your loins, and it is this. All the people are brainwashed into believing that talking is the only kind of communication that counts. This is particularly true in the relatively recent times, when ABA and ABA derivative peddlers made sure everyone heard that they and what they sell are the only “research-based” thing on the planet that could ever help anyone have a life, and the only kind of life was a life of yimmer-yammer, and it was patently impossible to learn to yimmer-yammer if one did not do so prior to the age of five, at which time one turned into a pumpkin, because one’s parents were woefully-scientifically-ignorant-read-negligent, and you know, since it takes a village, any parent allowed to be that ignorant in this the famous information age must have really ignorant and callous friends and relations.

Tracy Thresher and Larry Bissonnette stand on either side of a giant green sign that reads: "Not being able to speak is not the same as not having anything to say - Rosemary Crossley."

A great deal of time and money as well as academic and political power and savvy were spent trying to make sure this would become engrained in our public imagination as “a well known fact.”  I think the reader will recognize that all that stuff about ABA and the age of 5 and so forth doesn’t even sound funny or woo.  It sounds true, and fitting, kind of like we ought to brush our teeth.

It is not, in reality, true in the same way that it is true we ought to brush our teeth. It is true in a way much more analogous to the way in which it is true that we ought to own an imitation paramilitary SUV in order to be more safe on the roads. (In other words, not true.)

Your family more than likely does not mean to hurt you when it parrots back to you advertising about how those imitation paramilitary SUVs are really safer for your kids, because that little foreign econo-job you are driving would squash like a bug they just know it. A lot of thought and money went into making sure they would believe what they believe, or believe they know what they believe they know. And also your little econo-job is much safer, PS; you checked when you bought it. But that will never be allowed to be the first few hits on their Google search, or Google goes under.

What I think your family actually means to do, most of the time, with this, is show caring. They are saying something like this: I care, and I want to show that I care by showing that I Googled stuff, because in my imagination you will notice that means I was thinking of you. However, I did not think this through and realize that because it is your life and the life of your own child, you probably have much more in depth and relevant knowledge; and maybe a more fitting and useful concept of a way for me to show caring would be to listen, or give you cake and tea.  Tea!

Now: before I get on to the second part about their actual education, I want to talk about what to do about this part, which is what to do about how they are hurting your feelings.

It depends on your personal style, and what you feel comfortable doing and saying, and what you know of them and who they are.  Just one thing before I start saying this stuff.  I noticed you think of all of this as a confrontation, and it might help you if you reorganize it in your head as another thing which is not confrontation but rather the offering of information, because that is also really real: you are giving information to people, and that is not a thing which is a bad thing. It is a doable thing, a helpful thing, and useful.  OK.

One thing you could do would be to really tell them what you told me. It hurts. It hurts you. You could stop it there, as a separate issue from the educational issue, because if you imagine that your family does not want to hurt you or your child, you can say this. You can imagine that they do not know they hurt you and would want to know so that they can stop. Explain your feelings to them and let them be there for you in ways they cannot if they do not know it’s needed.

Another thing you can do if it is not in your family culture to talk about hurt feelings and you don’t want to do the educational features right now is cut if off at the knees.  You can say a thing like, that is all, I no longer wish to discuss anything having to do with language, there will be no linguistic discussion in my house.  (Sometimes this makes people say, But why? And you might then develop a situation where you go back to the first thing…so it might be an opening to an new epoch of family culture on emo-speak…)

A third thing you could do is launch straight into educational mode, not gently, as you have said that does not work, but as Captain Super Professor! Able To Assist The Misguided At A Moment’s Notice! The Minute They Accidentally Utter Some Ignorant Thing!  This can be kind of empowering and may tend to put you in a good mood.  It is kind of my lifestyle. I mean I am a little bit gentle in that I am in a good mood most of the time, but I am not, you know, difficult to read or understand. I do not say, you might like this movie some day, I say: This! Movie! Here! ‘Tis The One For You Now! (pressing an actual copy of Wretches and Jabberers into your hand)….

Which does bring me to education.

That is the second prong and the one I didn’t feel adequate to answer about until I got back from Syracuse having met a wide variety of more people than I already knew, who live good, successful lives without talking, or talking much. So I will list now a bunch of people I know in case you want to go the Totally Educational route.  Which I hope you do.  And I realize I don’t have to write as much about that as I had thought, because they have done so. (And you can show them everything I have to say about Eric, who doesn’t bother talking or writing much but can save my life in the sea, and lives exactly as he likes.) There is no problem about my inadequacy as a non-speaker because the non-speakers I know can speak volumes about it! Volumes and DVDs, youtube clips and blogs and more!

Please write back and let me know how everything goes.

Love,

Ib

OK so the List starts here just with some people who have produced media and I personally know:

Amy Sequenzia

DJ Savarese

Jamie Burke

Sue Rubin

Jenn Seybert

Mark Utter

Tracy Thresher

Larry Bissonette
Peyton Goddard

These people hardly talk if at all.  Many more of us move in and out of talking, like for example sometimes talking a lot and sometimes not at all. Let me know if you want the list of us and where we talk (or...something analogous) about that! 

PS Also, other readers please help with this, please list other resources you know to help educate DWFM's family.  Since that's just who I personally know, I know other people I know and don't know must know other people I don't know yet.  Such as Barb Rentenbach, I don't know her yet and she has a great book I'm hearing now! Thanks!

PPS And here's Ariane's resources that she shared below, in a proper link. Thanks Ariane!

New Blog In Addition To This

Hi Tiny Grace Notes Readers,

Decided you might like to choose whether or not to read radical stuff that causes Autistic adults and close cousins to have strenuous disagreements...  Of course, I do recommend it, because of the awesome and fascinating factor! But I also recommend free choice.  So I've started a new blog for things like that, called NeuroQueer.  You can also ask questions there if you think they might be political or edgy or not fit here.  I'm still me.  ;)

Love,
Ib

Important Correction Re: Origin of "Neurotypical"

Jim Sinclair posted the following correction on the blog just now:

The term "neurotypical" did NOT originate the way you claim. It was coined on the old SJU Autism list, during the "Snore Wars" in the aftermath of the 1993 conference where "Don't Mourn For Us" was presented. It was coined to do exactly what Alyssa said: " I think we need a word for "close enough to the alleged norm to get privilege from it."

Therefore it is clear to me that the term is older than I had believed by some five years, and did not originate as a joke, because Jim Sinclair is someone who would have authoritative and trustworthy information on this topic.

I should here also clarify that my essay was an argument for the idea that we should move on from this term because of the reasons I specified, and not an attempt to claim that everyone agrees with me.  Many do, but many do not.

My primary reasons are that the term is often used disparagingly, and that it is easily used by accident against people who are not, in fact, accurately described by it. An important thing I think about this second issue is that many of those who fall under categories known as "mental illness" and "intellectual disability" may be less privileged in some ways as a group, right now, because of political gains we have made since the coining of the term, than are Autistics, and we can do some good here instead of doing harm.

I regret my historical provenance error and thank the ones who had better facts for coming forward.

In other news, I still agree with myself about the idea that we should recognize gains we have made and behave inclusively toward those with all forms of neurodivergence, including those with greater stigma, and that calling people "NTs" does not help us do this.  I also reiterate that while I agree with myself and those who agree with me also agree with me, it is manifest that other people do not.

Thank you for listening.

Love,
Ib

Important Notice: There Is No Such Thing As A Neurotypical!

“Neurotypical” was derived from a joke, and the joker was angry, and it makes sense that there was anger there then. http://isnt.autistics.org And this site is pretty funny, and was made a very long time ago. Worth a look, and a moving on, because now is now and then there will be tomorrow, and we’ve miles to go before we sleep.

[Update: I got that last paragraph wrong. Click here for better information: http://tinygracenotes.blogspot.com/2013/07/important-correction-re-origin-of.html ]

But there really is no such thing as a typical neurology, much less a “Neurotypical,” any more than there are properly such things as “Normies,” when it comes to the rich diversity of human life.

Sometimes the people who say it (or call themselves “NTs” for short) are people without Autism, and they are our allies, and they are saying it in order to show that they in their understanding hold the belief that their allegiance should make them take a one-down position by calling themselves a thing that is really quite insulting. I suspect they believe this because other people have mistreated us, and they are assuming guilt by association. Please, friends, stand side by side with us. You are no less than us. No one-down. Together.

Sometimes the people who say it are ones who endlessly identify themselves as “higher functioning” or some other kind of relatedly self-aggrandizing thing and in fact they believe themselves to be superior to others, including not only other Autistics, but also other people in general. I just read a strange article from one known to be such a person urging other such people to be kind to the “NTs” because it is more sort of polite and noblesse oblige or what have you, all the while still using the name-calling term…

But listen: apart from being insulting, and derived from a joke, and long since temporally and culturally outmoded, and theoretically just silly, the whole concept of neurotypicality is fundamentally flawed in ways that *can actually cause harm* and this is why we should all come together and just stop saying it.

Neurodiversity is a real part of the human condition that includes divergence in many directions. It is not only Autism that constitutes a neurodivergence from the alleged (Alleged! Let me say it again: Alleged!) norm, and by the time we tally up the ways in which the brains of humans can differ, I’m hard pressed to believe the neurominorities put together will not secretly constitute an actual numerical majority.

Here is where harm comes in.  Many of the neurological situations a person can have cause even more stigma than Autism now, because we have, of late, gained some political power thanks to ASAN, AWN and some of our freewheeling awesome activists and Social Media Crises (you know who you are and we love you xxoo).  For this reason, people may not feel comfortable being out at work about disclosing that they have bipolar depression, for example, or using it freely with identity first language. We can think of many other examples, not just involving the stigmatization of what are called “mental illnesses” but also neurologies called “intellectual disabilities.” Are such people “NT”? No. But a number of the types of people on the autism spectrum who are happy to call other people “NTs” seem also quick and happy to throw others under the bus if that it what it takes to make sure nobody blames anything on “the spectrum.”

This is not only morally wrong and sickmaking but a social justice misstep and has to stop at once.

In this little article I’m talking mostly to Auts of all stripes but I also want to talk to parents. If you think about Neurodiversity in a Big Tent (thanks to Liz Cagle and Michael Scott Monje Jr. for this superbly visual way of thinking of it, which also articulates some more physical manifestations of neurodivergence) you may find that you have more in common with your kids than you first imagined. You may also have custom-made brains!  Search yourself and your past and see if it isn’t true. Depression? Anxiety? Dyslexia? Band together!

And I, and many, many (ever-increasingly many) of my friends will stand with you.

First, do no harm.

Second, see what we have in common.

Third, let’s have a cup of tea.  Because tea. (There is tea in that thar tent.) (Allies welcome. Tea!)

Thanks for listening.

Love,

Ib