Zoom Magazine Spring Issue is Here!

Hi everyone,

Just found out they did another issue of Zoom Magazine. It is still awesome. Check it out here.

Love,
Ib

ZOOM Autism Magazine!

Dear Readers,

Today I am delighted to be able to share with you the launch of a new magazine that I believe will change the face of autism magazines.

Zoom Autism Magazine Fall 2014 comes out today, featuring articles from M. Kelter, Cynthia Kim and Jess Wilson among other fine voices. The editors have so far more than lived up to the magazine's promising subtitle of "autism through many lenses" by creating a beautifully produced document inclusive of a kaleidoscopic range of perspectives. This is a magnificent accomplishment.

I have never met the excellent editors Sharon Fuentes, Sharon Cummings, and Jodi Murphy, nor have I met many of the voices in the inaugural issue of Zoom, but I want to: to me, all of this says that Zoom is poised to be a forum wherein community can truly come together for fellowship and education.

And here it is: the link to Zoom Autism Magazine!

Love,
Ib

You Are Not Alone

Dear Readers,

This summer I will be able to get back to regularly scheduled blogging.

Meanwhile, I have been able only to answer emergency private messages. 

Something struck me about a majority of my answers in these things, and I wanted to say something about it here, because I can write it quickly and give it to the world, even if I am having various difficulties at the moment.  It is this: one of the most important things I can ever say to anyone is that you are not alone, and finding community changed my life.

I want to give you these resources for parents, and also disabled people (largely Autistic, in the case of these resources, because of the audience for this blog) because in them you can find a wealth of like-minded parents and also other Autistic and other disabled adults who are the kind of people who want to reach out to parents in fellowship and share experience, strength and hope.

First, PACLA, which stands for Parenting Autistic Children with Love and Acceptance. This is a Facebook Community group in which you can put up a question and specify if you want it to be answered by only Autistic people for an insider experiential view, or the community at large for the kind of interactional experience or systems understanding or group support that knowing people who have the same things in their lives can bring. From what I see of the people who write to me, most people would love this group and I always send people there privately.

Here, to see what PACLA stands for, is a link to the inaugural magazine they put out: PACLA Magazine, First Issue. I love this magazine. The editors are parents of Autistic kids and Autistic themselves! It is an honor to be part of it. The word 'magazine' doesn't even come anywhere near doing justice to the awesome, and these two claim it is their first time. The only reason I believe them is because I believe them, not because of the evidence. :)

Like what you see? Here is a link to the Facebook Group for PACLA RIGHT HERE. One of the people who started it, Alyssa Hillary, is a fabulous young Autistic activist scholar, a good friend of mine in person. Many parents and autistics are involved, too, in addition to the ones who started it, and the movement is growing.

Next, look at the archives of this blogging collective in which I sometimes participate, and so do many others. It is called We Are Like Your Child and can be found online HERE.. The point of this blog is that we talk about difficult issues within, and how we create workarounds for these things, to make things doable notwithstanding. The disabled people who write here are all people who, like me, care about Autistic and other disabled children and their whole families. All of us are reaching out for a better world. This is another place to find people who will make you notice you are never really alone. They are part of my personal lifeline. May they (we) be the same for you and yours.

Thanks so much for your patience and I will see you in June!

Love,
Ib

Today Is World Autism Awareness Day

Today is World Autism Awareness Day.

A couple of days before this day, I was at University of Michigan, giving a talk called Autistic Activism in an Age of the Blues.

If you click on the name of the talk, above, you can see my description of it that the Department of English Language and Literature put forth for people to use in order to decide if they wanted to come.  The basic idea was to explain the background, or rhetorical genealogy, of lighting it up blue, starting with the onset of puzzle piece as a shorthand way to represent our people.

None of it has much to do with our actual people, or anything real about us. 

The turnout was first of all so many people I was surprised! And second of all--this part is not so surprising because I am getting used to paying more attention to real life than to media representation--full of lovely people. To hear the ad campaigns and the news and the researchers that get funded by the right kind of corporations tell it, everyone thinks I'm a tragic burden from fearsville, pityland.

In real life, I go around in the world keeping meeting a diffuse divergent kaleidoscopic spectrum of the wide world of wonderful.

Rock on, real life.  Especially Michiganders.

One of the many Rockin' People is the emerging technologies librarian Patricia F. Anderson of University of Michigan, and I'm mentioning her in particular (hi there :) ) because she made this wonderful thing, a Storify, where you can read the things I was saying at the talk that she and others picked up and Live Tweeted by writing them quickly on Twitter right when I said them. Multi-tasking Heroics! AND THEN! She put links to the real things we were talking about, like Tone It Down Taupe, so you can easily look it up.

Also when you are on there on her Storify page you can see other talks she went to and did this. It is fun.

Here's that link now, in case you want to see more details about what we talked about: The Awesome Storify Narration of the Michigan Talk.

So the lovely people and I talked about all sorts of things, like neuroqueering, and being a mother, and our own families, and school, and subversive ways Autistics deal with stigma, and how all the ways of being neurodivergent are not that different from one another...and so much more.

Take that, Stigma Awareness. I'll be aware of Acceptance, Appreciation and Awesomeness instead.

Love,
Ib

Candlelight Vigil Tonight

Today is a day of remembrance, a Candlelight Vigil for Autistic Children Who Lost Their Lives After Wandering. If you click on the link, you can join us in the virtual vigil group on Facebook. Please do.

We come together today to mourn those who are gone from us. They cannot be brought back, but they will never be forgotten.

While the issue is complex, I know it is something many more fear, whose loved ones are not gone, but might become gone; and if this is you, or someone else you know, I invite you to consider reading a post I wrote on the topic last June. It may have no application, or it might.

My heart goes out to the families and friends of those we have lost.

[Pic of a candle in cupped hands, in the dark. Words: Loss leaves a heartache no one can heal; love leaves a memory no one can steal.]

Love,
Ib

What is Autism?

What is Autism?

Click here for a short, reliable, definitive description.

Nick Walker wrote that, and I'll be glad forever.

Thanks, Nick Walker!

And thanks to all of you who click on it!

Love,
Ib

Stop Combating Me

Congress is getting ready to reauthorize the Combating Autism Act, and I hope they don't. I'd rather have them write a real thing that does what people meant for this one to do when they accidentally voted it in, back in 2005.

I'm tired of politicians and fake charities tricking everyone.

This act says it helps us and our families.

But if you ask my mother, she will not say preventing me from being born would have helped her. My father is glad I was born, too. I think my brother and sister are also pretty happy about this thing of me existing instead of being never-born. Don't get my wife started on this topic, unless you want to find out what an irate Scot looks like.

However, the vast majority of research money for "Combating Autism" under this act is ear-marked for prevention of us. Preventing families doesn't really help families, when you think about it.

If I had not been born, my children would not have been born.

Autistic Self Advocacy Network reports:

Of the $217 million NIH spends on autism research, only 1.5% goes towards the needs of adults and 2.4% towards improving services. We can do better. Will you help by signing our petition telling Congress to reform CAA and to stop combating people on the autism spectrum and families? You can find it HERE. (Please click and sign!)

Some people think "Combating Autism" is the wrong name for this act, because they say it is helping us instead of fighting us. But I think it is being pretty honest about what it is.

It is fighting against us instead of trying to help us.  I can respect the honesty. But I would prefer respect and real help for real people. I prefer being treated as a real person.

Please, readers, will you sign the petition and ask them to stop combating me and people like me?

Love,
Ib

I Am A Mother (Part 2)

Checking in... the ABA project was a giant undertaking for someone who has such a hard time writing! Thank you so much for your patience!!

Here is a thought that came to me today, this morning, as I stepped on a Cheerio, and laughed.

[Image: Cheerios strewn over a hardwood floor. Not unlike what you might find in our kitchen on any given morning! Oh who am I kidding. I don't know what time of day it is, and neither do the ever-present Cheerios.]

I laughed. And then I thought: whoa. This is me laughing about Food Being Where It Does Not Go.

Before the boys were born, I "knew for a fact" this was not going to be able to happen.

Cheerios and crumbs underfoot, under my feet, going crunch, ack? It means I have a house full of cutefellas. I shrug and laugh. This is something I could never have dreamed possible.

Also it's something I think a lot of people will understand.

I am a mother.

Love,
Ib

Accidental Bully: I don't want to be that person

There is a person out there whose experience was me bullying him, but it seems like he more feels like my non-autistic friends should have been stopping me and has never come to me about it. I wish he would, because I want to tell him I am sorry for hurting him.

Let me tell you, at the time I felt like I was passionately defending my friend. I felt like this guy was being mean to her. I felt right about my self. But read further for what I have learned about this.

And here's another thing. I am not trying to tone police other people. This is all kinds of wrong.

But right now I am talking about my own self.

Intention is not magic. It does not matter if I think I was right in my opinions. What matters to me is that I hurt somebody. I got so passionate that I forgot to be COMpassionate.

Some people might know this guy I'm talking about, but not know that the bully he talks about is Autistic. It is. It's me. Please show him this, show him I'm sorry I hurt him, and the reason I haven't told him myself is because I don't know how to contact aliases. I'm not very computer savvy.

But I totally get it now that me feeling right about what I am saying does NOT give me the right to go around hurting other people. It does not.

So some moms asked me to join this flash blog against cyber bullying. And it broke my heart, because really? People's moms cyber bullying each other? What is this world coming to?

And then I remembered I accidentally bullied someone once.

Aspie Kid, I'm sorry I hurt you. I one hundred percent did not mean to, but I get that what I meant is not the same thing as what actually happened to you. This is important.

Everyone else in the world, please join me in deciding once and for all not to be that person.

 [Image description: Logo for FlashBlog, which says Don't Ignore Cyber Bullying, Mon. March 3rd 2014. It's a claymation looking guy trying to step through one of those red negation signs as in No Smoking or so forth, and he might succeed, as the slash on it is covering his chest like a sash, and he has momentum, and one of his feet is through the red circle already along with both his hands and the top of his head.]

On Being Human

Like many commuters, I listen to the radio a lot. Something hit me about the way they introduce new songs. The disc jockeys talk about the fact that a new song is coming up, and if we know the artist, they'll mention another song by this artist to jog our memories. If it's an artist they think we may never have heard of, they might say something by way of introduction, something to locate the new music somewhere in our minds, prepare us in a positive way.

Most of the songs on the radio are in heavy rotation, and they phase them in and out like this, with an occasional familiar oldie. These people know what they are doing. Why would they bother doing all this?

And I thought of this thing that happened right around the time in the middle of the eighties when I was getting myself kicked in and out of high school. It was an enormously big deal, and folks my age will remember, and I'll tell you what happened in case you are younger.

Coca-Cola tried to change its flavor to become "new and improved" and this was treated like a National Disaster. I am serious, people were really flipping out about this, and it was all over the news, for some time. It was a major topic of conversation. There was high emotion. Even Bill Cosby was somehow involved, but I don't remember his exact role, just that it was A Thing, because of his standing in the community.

At this time in my life, I believed I was not a human being, not the same thing as a person. But I was just now having this reverie about how everyone else reacts to change...

And here is another thing: people often see the sensory accommodations in my office and ask if I can help them brainstorm getting the whole workplace to be more like my office.  

People often read my writing on things like rushing and social and emotional confusion or distress and say they can really relate to it even though they are not autistic.

People often hear ideas of what can help kids like me handle executive functioning difficulties in the classroom, and declare, "I am going to try that for myself!"

Instead of not being human, what if I am very human, so outrageously human that it sometimes rises to the level of impairment? What if it is really that the things I cannot function without are things that would make everyone function better? My sine qua non might be every one else's sine qua shouldn't have to.

Love, 

Ib

Love, Not Fear

This is my entry for the Love Not Fear Flashblog. In case you are clicking from TGN directly, here is a link to the flashblog site itself, where you can read lots of others, and get yourself very happy: HERE IS THAT LINK. What I love about this is that it's organized by a loving group of people, some of whose kids are Autistic; and some of the people are Autistic themselves, and some are not, and some of them have no kids. Just a bunch of love bringing us together.

[Image: Flashblog logo of a pink and white heart made out of lacy smaller hearts with #PosAutive in it. It says, Flashblog: Love Not Fear, presented by Boycott Autism Speaks, and cites a deadline, for which I am late, of course.]

Lately I have been having a lot of trouble writing, so I will tell a story of Love winning out over Fear, in pictures.

One day a bit ago, we were having an action where we were supposed to take a picture of ourselves with a sign saying something like "I am not afraid to say I am Autistic." This was because something was making the fearmongers smear our name again, as usual, nothing really different. And I support these actions, but I have this thing of being rather precise. So, I couldn't lie. I do say it freely: I am Autistic; however, I don't say it without trepidation, especially when one of these media scarymovie frenzies is going on. This is the picture I made:

[Here is a webcam picture of me sitting on the bed, holding a hand-lettered sign. The sign says: I AM AUTISTIC AND TIRED OF FEAR.]

The boys were napping and Layenie came in and sat next to me on the bed, having finished what she had been doing really quick. She saw this thing I made and gave me a big, much-needed hug. Then she looked at her Facebook and saw a call for participation in another action that our people who love us were taking in support, having to do with This Is Autism. Layenie immediately made this:

 

[Layenie's pic here is of me with the twin boys, age about one, in the transition from baby to toddler. She has inscribed the picture with these words: "This is Ibby. Ibby is a professor, a mother extraordinaire, and a wonderful spouse. She is light, laughter, and love. She is books, trains, twirly things, and cracking up about the word underwear. This is autism, and oh boy, am I glad."]

This made my eyes leak. It also made my eyes leak to look at it again just now, and remember, and do the image description.

In a cage match between love and fear, love wins.

Love wins.

Fear can come back as much as it wants. For me, in my experience of my self, I know it will.

But I also know love wins.

[This is a meme that says "Caring and respect are better than pity and fear. People are better than Autism Speaks."]

Love is better than anything.

Love,
Ib

On What A Bad Idea Rushing Is...

I am still working on the stuff about ABA, which takes forever, and it is taking even longer than I meant for it to take, because I am trying to rush myself.

Which reminded me, I forgot to link to this article I wrote for We Are Like Your Child, about what a bad idea rushing is.

Here's the link: Please Don't Rush Me, on We Are Like Your Child.

Thanks for hanging in there with me, and much love to you all. Nobody other than my own self is trying to rush me in this instance: You all win! xx

Love,
Ib

True Answers About ABA (Part 1)

Hi Ibby! 

I am a Parent to a 3 year old Autistic girl. She is receiving OT, Speech, Music therapy and ABA. I have felt it was the ABA where the progress we've seen has been made. However, as someone who is a staunch advocate for my daughter and her Autistic peers, I want to always be doing what is best and least stressful for her.

I have seen quite a bit of controversy in the Autism community by receivers of ABA, that express having PTSD from the experience and are now staunch opponents of ABA. But what they describe going through and what many of our kids do, seem vastly different. Is there any way to clarify this issue, about just what ABA is and isn't and how, in layman's terms a Parent can avoid and identify it?

This is a topic that causes a great deal of angst, distrust and Parents feeling they are being labeled as abusers if they are using ABA...which I guess, may really not be? Any help at resolving this would be great!
Thank you!

Sandy


Dear Sandy,

Thank you so much for asking.

This question is so very important, and as you say, the things people say and do about it can be very confusing, and from where I stand, I have been able to collect more than the usual amount of information about why they have to do and say the confusing things that conflict with each other, and was wondering if I would be able to help.

I hope I can help.

I will try to keep this a little bit shorter than a big giant book by linking to other related things I wrote before, and breaking it down into parts so you can look at the pieces of the question you are interested in at any given time.

Here are the topics I will touch on:

Why are so many Autistic people who have been through ABA against it, and/or experiencing PTSD?

In that case, why would anyone defend it? What is going on there?

What do you mean by the notion that a type of treatment can be morally wrong?

But I have seen it work well, and you just gave what looked to me a whole lot like an example. Can you explain what is going on here, when it works well?

Why would that still be called ABA then? Why don’t they call it something totally else?

Can you see a solution to this thorny issue? What would it be like?

Meanwhile, before that solution happens, what are practical actions I, as a parent, can take in real life? I want to do what is right for my kids, and I also want to be a good person in the world.

I’m writing back now because I have had your letter for a longish time, I think, and I wanted you to know this is what I’m working on, and I think it’s really important, and I want to get it right. Please write back if my outline above doesn’t hit on all cylinders, but so far I have answers in my head for all the things above that I just need to translate into readable words, so that’s what I’m going for.

Love,
Ib

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