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