chavisory's post-it notes

Oh, also!

Giving your kids knowledge about their condition or difference or disability will not enable them in using that thing as an “excuse.”

It will enable them to think more constructively and efficiently about what they actually need and want to do, and to communicate with others about finding real solutions.

In fact, I remember usually making excuses only after my reasons were rejected, or I was pretty sure were going to be rejected as unbelievable.  Or I knew that a thing was too hard or too painful or I just didn’t have the knowledge that I needed but I did not know why.  Excuses are not “Specific reason why this thing is too hard for me right now.  But maybe I can try again later, or maybe I can try a different way.  Or maybe I actually can’t do this thing so I need an altogether different solution.”  Excuses are what you come up with when you’re pretty sure your reasons are going to be dismissed out of hand.

Things that confuse me this week

1. How accepting autism gets translated in a lot of people’s heads into “have no standards or expectations for your child and give up teaching them to get by in the world or take care of themselves.”

2. How it is in any way controversial that autistic people should be the primary voices in discussions about autism.  And how this has gotten translated in a lot of parents’ heads into “they’re saying that we’re not allowed to advocate or to raise awareness if we’re not autistic.”

No.  Just.  What?

Is this an analogy I could accurately make?

Listening to Autism Speaks about autism is like listening to Exodus International about homosexuality.

Anyone have any strategies for dealing with or disarming some fairly intense, out-of-the-ordinary in its intensity, communicational anxiety?  (It’s extending to both phone and e-mail communication.  Usually only my phone anxiety is as bad as my e-mail anxiety is now, and my phone anxiety is through the fucking roof.)

?

Autistic people should

1. Have fun

The day after I was diagnosed, I e-mailed a friend to tell him, and just to say thank you for, like, existing and being my friend, and he told me that Asperger’s is fun, and I should have fun.

And I said I intended to.  And I have.  And it is.

Because let’s be honest—obsessions, for one thing, are fun.

This is supposed to be fun.  If you’re not having fun, chances are that either your environment is bad for you, or someone is treating you not well.  Autism isn’t curable, but both of those things are.

2. Know each other

Knowing your own tribe is fathomlessly amazing, when you’ve gone a long time without having that.  To know that other people actually do feel and experience things the way that you do is a kind of safety and comfort I didn’t think was possible.

And one of the most amazing things to learn is that we’re just as diverse within ourselves as the rest of humanity is.  We don’t always agree; we don’t even all like each other.  We really are just another configuration of humanity.

3. Communicate in the way that works best for you

Somebody somewhere speaks your language.

4. Disbelieve everyone who tells you that if you don’t [do whatever they say] you’ll never make it in the “real world.”

Because it’s bullshit.  The real world is very big, and very diverse, and people manage to live in every way you can imagine.  And probably a few that you can’t.

5. Honor your strengths

And your weaknesses.

Incidentally, I pretty routinely hear or read about kids today, with diagnoses of “more severe” ASD’s than me, being able to do things that I could not at their age, in terms of advocating for themselves, articulating their emotional lives, feats of physical coordination, having lower anxiety or just generally being smarter or braver about navigating their environment.

Sometimes it’s even barely-verbal kids being able to say and describe things that I never have from an emotional standpoint.

I don’t know if this is natural variation, or the effects of good and non-abusive therapies, or supportive parents.  Probably some combination of all of the above.  But I regularly find myself pretty amazed at some of the abilities of kids these days.

So before you discount what I say because “you’re not like my child…”

Yeah, you may be right.  Your kid may be “higher-functioning.”

Just a general note

Parents, teachers, therapists, everyone,

You do not need to scold autistic people with the fact that “not all autistics are like you,” or “not all autistics function like you do.”

We know.  Autistic people know what the differences among autistic people are probably better than anyone.

Not to mention that we get reminded, by someone, practically every time one of us dares to say that being autistic is maybe not The Most Terrible Thing, or is maybe even acceptable.

We know.  You don’t need to remind us.  We know.

I’m gonna go ahead and credit the fact that I’m a lifelong toe-walker with the fact that I have never broken or sprained an ankle.

I have a question.

Why is the concept of the autism spectrum so damn difficult for some people?

Because I’m on it…which according to certain popular stereotypes means I shouldn’t be able to grasp nuance or ambiguity…and I get it.  And a lot of people who aren’t, and so therefore aren’t supposed to suffer from “overly black and white thinking,” don’t (or won’t) get it.  So…what is the difficulty?

Literally every article or blog post, literally ever, concerning employment, education, civil rights, or relationship issues of autistic people, draws these comments going “But some autistic people can’t do these things!  Some are severely affected!  Some have intellectual disabilities!”

And I’m like “Right, I know, it’s a spectrum condition.  That’s what that means.”  That there aren’t two distinct functioning categories—there’s a broad and continuous range from very severely affected to less apparently so, on a range of different factors.

Really, I’m curious.

What is the precise difficulty in understanding the concept of a spectrum condition?

Okay, that works.

So…over-the-counter pain meds really do work on overload.  Not great, but serviceably in a dire situation.

I’m starting to think that there aren’t very many things that 4 ibuprofen won’t help.

To be what you must, just reach out for what you are.

I saw something tonight that makes my heart ache badly enough that I need to respond.  And I hoped to do so in one coherent post, but what I really wanted to write started to get very long, and difficult to write about, so I wanted to go ahead and start getting it out of me.

This came across my dash:

So there’s this girl

in a group I’m in who just made a post:

Ok I am looking for a very specific type of person right now. I am looking for someone who has high functioning autism ( ie Aspergers Syndrome) who has gone to college or is going to college. I am approximately a year from college and am freaking out!!! My dad keeps telling me I am not ready and I am starting to believe him. How [d]id you cope with transition. How about other nerd fighters how did you cope with the transition?

Yup, I’ve been there.  And the knowledge of a kid like me out there feeling like this makes me frantic.  So I’m still available for messaging, but I couldn’t not start anyway…

Dearest,

Some background:  I think I’m what you’re looking for.  I’m 30 years old.  I had what should have been an obvious autism diagnosis missed as a toddler, and was finally diagnosed with Asperger’s at 28.  For the most part I think functioning labels are bull crap (they dismiss strengths in the “low functioning” and serious challenges in the “high functioning”), but, sure, I’m what most people think of when they think “high functioning.”

I graduated from high school in 2000, and from college in 2004, with not just a double major but a dual degree, with honors.  I live on my own in a major city.  I’m a freelancer in the performing arts.  I love my job and I’m good at it and people like me for it.  Financially, I just barely make ends meet, but I’m on my own, doing what I want.

And I want you to take a deep breath and disbelieve your father with everything in you.

While I firmly believe that not everyone can, should, or needs to go to college, and that that’s perfectly okay, I have a feeling that you think you can, and that you’re having your trust in yourself undermined.  That’s what’s not okay.

You’ve probably heard people say that being an adult is not just about doing what you want.  They’re wrong, or lying.  It really is.  It really, really is.  I mean, of course you have obligations…to do your job to the best of your ability, to pay your rent, to be kind and fair to other people.  And if you have children, then of course your first duty is to be there for them.  But aside from meeting whatever your basic responsibilities are, being an adult really is about making your life what you want it to be.  Something you can be proud of.

This is your life, and your future.  And no one is going to give it to you.  No one is going to let you have it without a fight.  You are going to have to take it.

Your father will never decide that you’re ready.  It’ll always be something.

I think you know you can’t live that way.

Adults do not ask permission to live their lives.  Don’t.

The thing about some of the best things in life, is that no one is ever “ready” for them.  If you’re going to ask your father anything, do not make it “what do I have to do to be ready?”  Make it “which of the most meaningful, transformative events of your life were you actually ready for?”  You’re not “ready” for college.  You don’t know the half of it.  (If you can, let that thrill the fuck out of you rather than scare you.)

But you can do this.  Because if this is how people have always treated you (it was for me), and you’re reaching out to fight it, then I already know one thing: you’re a fucking survivor.

I didn’t know how to reach out for help or advice when I was your age.  I didn’t even know there was anyone else like me in the world.  (Well, the internet was not exactly in the state it is now.)  See, you’re already ahead.

People have done this before you, and we know it can be done, and it’s worth it, and we’re cheering for you.

The world is so worth living in on your own terms.  I want you to make it.

How do you treat things you hate?

To parents who still think it’s okay to say “I hate autism,”

First read this, if you haven’t:  http://mamabegood.blogspot.com/2012/03/you-cant-hate-autism-and-accept-it.html

Okay, now knowing what autistic adults tend to say about how hurtful your statement of hate is to people like us…people like your children…I’m at a loss as to how to understand your continued insistence on using this phraseology.

(Isn’t empathy something that non-autistic people widely claim to have?)

If somebody hates something, some trait, some condition of being, and then they see it in another person, how do you believe they will then treat that person?  Why would you think your child will be immune?

How will people treat your child when they see autism in your child, if they hate autism?

How do people treat things they hate?  How do you?  With patience, compassion, respect, or kindness?  How do you expect people to treat expressions of your child’s autism—and by extension, your child—if they hate autism?

You say you don’t see it as part of your child, as part of who he or she is, just something that gets in his way?

How does he see it?  What is it to him?

You don’t know because he can’t communicate it?  Then how can you presume what he thinks or feels about it?  Because of his communication difficulties, your opinion of his life counts more?

What if, to him, it is just how he is?…..And you hate it.

What’s the truest thing about yourself, the truest thing about how you function in the world?

What do you feel if someone says to you, “But that’s not really you.  That’s just something that gets in your way?”

Or “But you’re so much more than that?”

Your child might not conceive of his autism as that intrinsic to who he is.  Not everyone does; he’s entitled to his own opinion.  But a lot of us do.  He might.  He might not yet.  He might never.  But he really might someday.

And then, if you’ve been saying for his entire life that you hate it?  Then you have been telling him all along that you hate who he is.

Is that really, really a risk worth taking?  Just to feel like you have a right to vent your deep dark feelings without regard for who you hurt?  Is it really?  Do you hate autism that much, that to put your child’s self-worth on the line like that is worth it?

And will you one day be proud to explain to your child that your presumed right to say these things was more important to you than his or her sense of self-worth, acceptance, and safety in the world?

Open letter to googlemouth666

Dear googlemouth666,

I was actually really sorry to find your blog de-activated a couple mornings ago.  I don’t know if you’ve fled Tumblr, or simply changed your username to escape further embarrassment.

Huh, so you also have Asperger’s.  Damn, I missed that one.  It happens, but I shouldn’t have assumed.  Sorry.  But you sounded so much like someone who didn’t have one single clue what it’s actually like.

I wasn’t surprised by your answer to my question: Who in your life is or was making you believe that you deserve to be treated so badly because of the limits of your condition?

I was surprised by the straightforwardness of your answer, and that you already knew it so well: Just about everyone in your life, up until a little while ago.

See, I was wondering, if you are also autistic, then you DO know what all of the underlying challenges are.  You DO know what kind of work it is to deal with.  So how could you sound so much like you don’t have a clue?

Because no one around you does.  Because you’ve been alienated from your own self-knowledge and self-acceptance.  Because that crap is all you’ve ever heard from the people who should have been supporting you, so it’s all you know how to say, because they said it until you believed it, even of yourself.

You don’t need help learning to express what you mean; you need to figure out what it is that you really believe, and not what everyone around you has always told you about yourself.  Because they lied to you, very badly.

You deserve better.  You deserve for someone to understand how much work it is.  You deserve for someone to at least try to understand you for who you really are, not abuse you for falling short of their standards of rightness, which really means normality.

Here are some things that no one probably ever told you.  Try to get your head around this: 

It is not a sin to be autistic.

You are not doing anything wrong by being autistic.  You are not hurting anyone by being autistic. 

It is not a sin to be visibly, obviously autistic.  If someone is hurt or offended by it, that’s their problem, not yours.

Being autistic is not synonymous with having bad manners.  I know several autistic people with the loveliest manners I’ve ever seen, who are the most unfailingly kind and polite people on the face of this earth, and they still have massively obvious social differences and disabilities.

They are not doing anything wrong.  They are not being lazy or rude because they’re unable to hide the fact that their brains make them work differently.

The kind of illusionism that some of us master so that most people in casual social situations would never know we’re autistic is a skill—and I won’t deny it’s a useful one—it is not a moral virtue.  It’s a choice, and it has costs.  People who choose not to do it are not being lazy, rude, or using their autism as an excuse.  They’re making a choice about how to spend their energy.

Appearing normal is not a moral virtue.

Again, I don’t know you and I could be wrong about all of this—I dislike it when people with an agenda presume to know something about my individual history when they don’t, so I try not to do it other people—but I have a feeling I’m not.

Were you being lazy and rude when everyone said you were?  I doubt it.

Self-acceptance is not only more fun and better for you; it’s actually better for everyone around you.

Self-acceptance doesn’t mean that you don’t work to push your boundaries.  It doesn’t mean that you don’t try to learn social/conversational skills and practical adaptations.  It doesn’t mean giving up on trying to connect.  It doesn’t mean being a jerk to people for pleasure and using Asperger’s as an excuse to do it.  It doesn’t mean not taking reasonable measures not to hurt or offend other people.

It does occasionally mean telling people who are trying to threaten you into being something you’re not, or demanding an unachievable level of performance from you, to go suck it.

It means having compassion for yourself, and for people less able than you.  It means not hurting yourself trying to be something that you cannot be. 

You can be a good neighbor, a good community member, a good friend, without destroying who you actually are.  You can’t be any of those things without being true to yourself.

I wish you’d come back to Tumblr and get to know the community.  Your autistic internet neighbors are mostly good people.  I believe so are you.