Wednesday, July 31, 2013

Dealing With Family's Clueless Questions

Dear Ibby,

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

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

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

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

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

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

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

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

Thanks for everything you do,
Just call me

"Dealing with Family Matters"

Dear Dealing with Family Matters,

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Which does bring me to education.

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

Please write back and let me know how everything goes.


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

Amy Sequenzia
DJ Savarese
Jamie Burke
Sue Rubin
Jenn Seybert
Mark Utter
Tracy Thresher
Larry Bissonette
Peyton Goddard

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

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

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

Monday, July 29, 2013

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.  ;)


Tuesday, July 23, 2013

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.


Monday, July 22, 2013

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. 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: ]

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.


Friday, July 12, 2013

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