New Blog In Addition To This

Hi Tiny Grace Notes Readers,

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

Love,
Ib

Important Correction Re: Origin of "Neurotypical"

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

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

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

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

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

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

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

Thank you for listening.

Love,
Ib

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

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

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

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

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

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

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

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

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

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

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

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

First, do no harm.

Second, see what we have in common.

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

Thanks for listening.

Love,

Ib

I'm Grateful For You

I was no picnic

Not in the park

Not even at a truck stop

Or a bench on the street

I was no picnic

But you believed in me

And taught me things

And stood by bravely

When I didn’t get it

I see you and

I’m grateful for you

They didn’t make it easy

Not the doctors

Or the people at the school

Not any of the schools

Or the neighborhood

They didn’t make it easy

But you fought for me

Made space for me

And never gave up

I feel your love and

I’m grateful for you

Sometimes it’s hard

Even though I’m older now

Even though I’m wiser now

And as a late bloomer

I’ve got something to show

Sometimes it’s hard

But you’re there for me

And I trust you

I’m a Mama now too

And I hope I’m like you

I’m grateful for you

Love, 

Ib

We Are Like Your Child: Lost, Mistimed, and Melty.

A group of us (Autistic and other disabled adults) have gotten together to start a collective blog called We Are Like Your Child because we want to help by talking frankly about difficult things and how we get by, so that people can see what happens when we grow up, in more intimate detail.  Some people might think our messages of hope and pride mean we don't think or admit we have problems, but that's not really the case.  We totally notice.  I just posted a story that happened just recently here at this conference, as an example.  Please add the blog to your reading list and check it out!

We Are Like Your Child: Lost, Mistimed, and Melty.: This just happened, so it is a quick vignette which I wanted to put here as I believe it will fit in to the theme perfectly. There are dif...

Radical Neurodivergence Speaking: Autistic Pride Day 2013

Radical Neurodivergence Speaking: Autistic Pride Day 2013

Wandering. Please Read And Spread Widely.

There have been a great many questions coming in during the past few weeks about wandering or eloping or the various things people call it, so many that it was hard to pick a particular one to answer, because of the different nuances.

Some of the questions were about my "position" on it, and some were about my experiences, and some were about whether I could help.

I have read the things that brought up some of these questions.

My heart goes out to the families of the children who wandered into danger and are lost to us now. You are all in my prayers. I have something very practical in terms of help and assistance to offer for families in similar setting situations, which is why the title asks you to spread the word.  Soon I will post this brochure and contact information.

For those who wanted to know my experiences and maybe thus what I think about the idea of the "wandering diagnosis" controversy, I'll answer this a little, because the good news at this side of the story is that I totally "get" danger now at age 43 whereas looking back I was one of the white-knuckle-conducive kids that didn't have the foggiest clue about it before (sorry Mom). So, happy ending. I did wander around the water especially and there were these bridge access ladder things that, looking back, you are obviously not supposed to climb on, but of course I had to be there. The difficulty of getting on there could have been a clue, but, you know, no, because it was that much more compelling to get the perfect view of the dappling on the water.  I also hung around train yards and so forth.

My thinking at the time as far as I can remember, and I have been thinking about this for a couple of weeks so I could report it properly, was sometimes more like, "Whoa, cool," as in a towards-wander, and sometimes, "Gotta-go-now" as in an away-wander, and sometimes it was wandery, but sometimes kind of zippy, like even thinking it was zippy, and even to the point of panicky.  I have the zippy thoughts now, but I do not do them, and this next paragraph is why.

In the away-wandering, I actually stopped doing that rather recently maybe early in this Millennium because I found out how much it hurt people's feelings. It was not easy to stop it.

In the towards-wandering, again, I have a concept of danger now.  I do not recall when I developed this but I no longer think it is an attractive idea to do whatever without thinking about it. There is another faculty that kicks in, another thought voice, that's like, you know, you're going into the street, might want to look for cars not to drive on your foot or your body. I don't know why this started.

A third wandering thing, a slower one, which is slow and in NO way do I mean it to put any onus of "blame" on any family or friends but since this one is not gone and still happens, I have to explain it too.  Also I pledge right here and now to work on it.  This is probably the classic, non-zippy wander, and it is neither to nor fro.  It's this.  Because all my life I have been someone that people think of as having the potential for kind of wandering off, I think I get the subliminal impression that people will follow me, like I secretly think I am the leader of the going of places. Somewhere in me is a belief or a trust that people will psychically find me or they will have followed me in the first place, because that is mostly true.  Again, Mom, I am totally sorry.  When I look back on my audiovisual memory files, especially of that day in the book store, how white with panic you looked... I really am sorry.

So to make a long story short, for me myself I am not thinking much when I go off somewhere, but the truancy from high school was more sort of an emergency, a communication like Landon was mentioning, and I couldn't talk about it because even though I am talkative, it is a new feature of me to be outgoing or really even let's say (to be charitable) coherent about emotions. So luckily, my folks thought of that at that time, because I guess it had a different flavor? I don't know. They are kind of psychic?

And remember this: I hardly ever do it any more, and I'm going to do it even less.

I forgot to say this: Sometimes when I was a youth and I got lost I did not like it once it dawned on me I did not really know my way back at all.  Like, really didn't like it. More panic. Not as if I thought it was dangerous in any reasoning-about-actual-things sort of way, but as if when I newly noticed myself to be not where I normally was, it suddenly became an issue of drastic proportions and felt life-threatening for some reason when prior to that it had been just fine with me.

Now.  This brings me to this.

Some people don't talk, and they are really young, or they are in other situations where they do not have a grasp of dangerousness right now, and the concept of them going out by themselves is really stressful for everyone because they could really get hurt, or dead; and it is a constant glass-in-the-guts worry for people who love them and want them safe.  This is also true of some people with Alzheimer's and Down syndrome, by the way, as it does not just happen with Autism.

Where I live, luckily I am on the Mayor's Advisory Commission on Disabilities which gave me a chance to ask Marita Manning, Certified ADA Coordinator, how they handle that here.  It turns out there's a wonderful grant they got here in Naperville for a thing called Fastrack where NOBODY on it since they started has been lost for even half an hour!  I think that's kind of awesome.  She is the one who trains with a special team of selected Police how to work with the tech as first responders in a rescue so they don't alarm the person and they would also be able to notice if something else was wrong.  So the people are found within thirty minutes AND treated kindly and gently by specially trained officers.

Marita Manning, the Certified ADA Coordinator for Naperville, IL, is the contact person training and liaising with our Police on this life-saving program. She is delighted to have me spread the word on this blog and have anyone get in touch with her so she can explain how to get this in your location.  Marita Manning can be reached at E-mail: manningm@naperville.il.us Tel: (630) 420-6725 Cell: (630) 421-0260 TDD: (630) 305-5205

[Image: a brochure, scanned. Update written in the cold winter maybe six months later: when I wrote this in the past summer, I did not know that screen readers could not read the words in a scanned document. There are a lot of words in the document, the most salient among them being the information that in this program, the first responder team is a volunteer team of specially trained ones who get to know the people ahead of time and are familiar with communication styles and the whole family dynamic, and they say "locating people is only half the mission" and that they emphasize relationships before the need for a rescue may arise. I think this is pivotal and wanted to make that information accessible because I am sorry that it might take me a while to find this document again and type out the words inside which I will then put as a PS at the end of this post as soon as I can. Thank you for your patience.]

So to make a long story shorter, I have scanned in the inside of the brochure about it here as it works in our town, but Marita told me to spread all her contact info all round the place so that people can get this program into their own towns and special teams of Police can be trained in this way.

With the technology we have now, people who wander away can be found very, very soon, and with the knowledge we have now, they can be found by Police who know how to show the kindness they feel in their hearts toward people who are innocent and in peril.  Just look at the way the brochure is written and give Marita a call or e-mail to get that in your location.  We can stop this danger together.

Everyone please contact Marita so much that Fastrack is available EVERYWHERE and Marita, who is totally kind, is moved to yell at me from being contacted too much.  That's how much contact I hope she gets from this blog being re-blogged.  Hehe.  Laughing but serious.  She's got a grant for this and she can tell your town how to get more grant money, too.  She's brilliant.

Fastrack saves lives all the time.

Once again with the contact info:

Marita Manning, Certified ADA Coordinator for Naperville, IL, can be reached at E-mail: manningm@naperville.il.us Tel: (630) 420-6725 Cell: (630) 421-0260 TDD: (630) 305-5205

Thank you for listening.

Love,
Ib