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