Susan Senator writes for The Washington Post about how her 22-year-old son autistic son Nat is showing a maturing interest in communication-- through Facebook:
“Hey, Nat,” I said, “you want to type on my Facebook page here?” To my surprise, he answered yes. I had no idea what to expect and sat back while Nat’s finger hovered over the keyboard, his thoughts slowly coalescing into words. He’d finally shout one out and I’d say, “Okay, type that!” Then he’d sound it out, using the invented spelling of kindergartners — but this was anything but babyish.
Seeing Nat’s words on the screen felt miraculous. One of the first things he typed was — not surprisingly — “look at pikerts” (look at pictures). I posted a note on my Facebook wall that Nat was typing. Moments later, responses began pouring in. It seemed like all my Facebook friends wanted to talk to Nat. I asked Nat if he wanted to say something back. He typed some responses, “hi” and “how you.” I wanted to shout, jump and kiss him all at once but I stopped myself. I had waited many years for communication like this, but my son is also a 22-year-old man. I encouraged him, but quietly, the way he needs it to be.
Lydia Brown's list of rules for How to Talk to an Autistic Adult is thorough and intelligent:
8. If you are speaking to an alternative and augmentative communication user (i.e. an adult who communicates using picture cards, signs or symbols, a letter board, or by typing), give him, her, or xir even more extra time both to formulate responses and to produce them. AAC takes longer than speaking, so make sure that the adult is actually getting equal time to "speak."
9. If the adult has a personal assistant, caregiver, parent, or staff person accompanying him, her, or xir, do not speak to the Autistic adult through the other person or ask that person questions about the Autistic adult. Address the Autistic adult directly.
10. If the adult has a service animal, such as a dog or a cat, do not touch, call to, or make sounds at the animal without explicitly asking the owner for permission.
Lydia is a little more dogmatic and politically correct than I would be, but she knows a lot more about communicating respectfully with a broad range of autistic people than I do.
So I will add only one thing:
Please do speak with autistic adults. Don't demand that we speak back, and please be sensitive to signals that we may not be able to handle conversation at a particular moment. But please also be sensitive to signals that we do want to talk.
And please try to be especially open to conversation with people who have communicative differences or intellectual challenges. There is a tendency, even among some parts of the autistic community, to make the assumption that because communication is laborious for some people, they would really rather just be left alone. My experience is that this is rarely true.
I have also found that people who communicate in different ways or who have the kind of intelligence that does not show up on IQ tests often say things that stun me with their wisdom.
Paul Hughes is a smart, funny English guy who gave this presentation about living with Asperger's syndrome at Edge Hill University in 2010 as part of the 'Communication: A Key to Success' conference.
He talks about what it's like for him to want to communicate, but to be unsure how of how to do it or whether what he has to say will be accepted. He and his roommate, who also has Aspergers, often sit together without speaking. And the sort of "social skills" instruction he got at school did not help much when trying to make friends with young guys like himself:
No speech therapist told me that at nineteen if somebody insulted your mother, this was a really positive step. And that if you insulted their mother, this would be really good.
Paul does not disclose his Aspergers, except to close friends. He describes the terror he had of losing his diagnosis when being reevaluated, because then he would "just be weird."
Many aspies could benefit from considering the strategies that he discusses, like trying to turn conversations around and get the other person to talk about himself or herself and using jokes, which are scripts, as an ice breaker. I know that, like Paul, my best social skills training came from being involved in theater.
The connections between people are like circuits.
Okay-- it's like this
The connections between people are like circuits
And I never know what the voltage is going to be
Someone grasps my hand
And if I grasp them back
And complete the circuit
Anything can happen.
It's supposed to work like this:
You reach out to me, I reach back,
And we both get a light boost
That powers us along
But I never know what will happen
If I reach back and complete that circuit
Will we energize each other?
Will I get so much of a charge from you that I am left feeling fried for days?
Will I give you such a jolt that you draw back, rejecting me forever?
Will I feel a connection to you that overwhelms my soul while you appear to feel nothing?
Will I feel nothing?
Will I have any idea what you feel?
And what happens next?
Will you want to do it again?
What if I can't?
Will I need to do it again?
What if you won't?
So I have to leave
A lot of those circuits unconnected
Even though I know I hurt people's feelings
And deny myself opportunities.
It's about survival sometimes.
I live in an assaultive world
A world that slaps and stabs and burns
And insults and cages and shocks
And bleaches and ignores and makes sickness
Out of me
And I cannot fight back
All I can do is use words
To say these things are painful
To say these things are wrong
To say the first step towards ending the abuse
Is not saying when autistic people speak
"You are not autistic or you would not be talking"
"What you are saying is not the same as my experience so you are wrong"
"What you are saying is not what I want to hear so I wish they would ask a parent who will say the right things"
"What you say hurts me so you must stop talking"
"You are not thinking more about my feelings than your own needs so you are bad"
"Your existence threatens me so I am going to pretend you are not here."
There are days when the things I have to say are too much
When the need is too dire
And the feelings are too extreme
And the words grow and grow and grow
Until they are too big and they will not fit out of my mouth
Until they grow too heavy and I cannot lift them
Too hot for my fingers to touch
But mostly this:
The ideas I need to express become too complex
And I cannot trust that anyone will do the work
Of understanding them
And that work is so hard
And so painful
That it seems pointless to begin.
So today I am retreating for a few hours, studying Stanley Kubrick, and making a kaleidoscope.