Susan's Blog

Tuesday, February 4, 2014

What I Would/Should Ask Nat

I often feel troubled by not understanding Nat and his state of mind.  I do not believe in my heart that what you see is always what you get. I wish I could. People say, “If he doesn’t seem unhappy, he’s not.” Yes, but no. Sometimes I am not satisfied with that. So here is what I want to ask him:

1) Do you understand what I say when I speak normally, that is, quickly, using metaphor?

2) If so, do you feel bad when I adapt what I’m saying to a simpler language?

3) Do you know that I respect you, no matter how I talk to you?

4) Are you lonely?

5) Do you feel left out when everyone around you is talking? Or maybe you’re used to it by now?

6) Do you understand why we are planning your life without really knowing you how you feel about it?

7) Do you wish that you and Ben were close?

8) Do you feel Max reaching out in his quiet wispy way?

9) What do you want for your birthday?

10) Have you ever been abused?

11 comments

Maybe there’s a way to turn these questions into questions that he can answer.

For instance — suppose you want to find out if Nat understands one kind of speech better than another. It might work to make a game of asking him “Which one makes more sense? — [say something slowly here] or [say the same thing faster here]?” … then let him turn it around and be the question-asker, if he wants to.

Giving examples (to make the question multiple-choice) can make things easier. For example: If he might not be able to process “What do you want for your birthday?” because the very first word of the question is abstract and open-ended — “what” — and he can’t process any of the other words until he has processed this one, but he can’t process it because he doesn’t see how to tie “what” to anything concrete … another way to ask the question is to say something like: “Your birthday is next month [or whenever it is]. I want to get you a birthday present. Here are pictures of things that could be presents [show him pictures of things you think he might like]. Is one of these a good present for you?” Or maybe you could take him to the mall and ask him to “Show me things you like — Is this [pick up something] a thing you like?” If this doesn’t help … Can he draw? Maybe, after showing pictures or touring the mall with him, you could ask him to draw the best things he saw. These are just suggestions, which I am sure you will adapt to your knowledge of Nat. Maybe you and I can discuss off-blog what other communication suggestions/adaptations might be useful.

— added by Kate Gladstone on Tuesday, February 4, 2014 at 10:37 am

Kate, I was hoping you would comment, thank you!

— added by Susan Senator on Tuesday, February 4, 2014 at 10:40 am

I’ve found the ‘less is more’ approach works best for my autistic son & I. He spends so much time being watched, questioed by therapists and by us… sometimes just leaving him alone (in a controlled space, he wanders) brings up uniqueresponses that help us gleen his needs/interests.

— added by LaurasLark on Tuesday, February 4, 2014 at 12:25 pm

Showing at the store is hard unless they know exactly what they want. Mine wanted all the Sesame Street toys and as they were available we got them. Just looking… no luck. Picking out a clock – and there were only a few choices – he found difficult but did it. Picking out a 3DS game ditto and I finally just pointed at 3 I knew he’d probably like and then he chose from those.

The rest of the questions, I’m not convinced it matters. If there was a behavioural issue, that makes you think something is wrong, I doubt he thinks about it or cares. For the most part… men don’t. It’s women that wonder and lose sleep. Heck, men can’t even tell you they are going to run out of cereal or shampoo shortly, they simply wait until it’s empty. So, I truly don’t think it matters to him even if he was “normal”. Now, if he’s upset, not sleeping, behavioural issues etc… then trying to find the underlying cause would be important.

I would keep him informed about his long term plans. Ask him simply yes/no questions when you are looking for his input. Keep it simply, draw diagrams… but don’t go into the bits and pieces about how it works, finances etc unless you are certain he understands. As long as you know how it’s suppose to work… let it go for now. Maybe in 10yrs he’ll be able to understand… maybe not… but worry about it then.

— added by farmwifetwo on Tuesday, February 4, 2014 at 1:45 pm

I really like Kate’s idea of turning the birthday question around. Remembering your Nat books, Sue, I think I will try merging the two. Maybe make a simple book of my son pictured with an image of a wrapped present (“On C’s birthday, Mommy and Daddy will give him a special present.”) Next, “What could it be?”, with a few choices on Velcro. Next would be a picture of C looking very happy, with the same wrapped present image from before but this time as a lift-the-flap, and under the flap would be Velcro (“C will be very happy to see this inside!”). Then I could let him complete the picture to (hopefully!) get a better idea of what he would like most. We do already use “I want ____” sentence strips and choice boards, but I worry that C interprets those as demands on our part, versus an invitation to explore his feelings. He loves books about himself though, so I think this could work well– like a choose-your-own-adventure social story :) Thanks for the ideas, Sue and Kate!

— added by Anjanette on Tuesday, February 4, 2014 at 8:35 pm

A suggestion I have as far as the birthday gift goes would be, one day when the family is together, have a discussion about it. Like Ben could say, my birthday is in (whatever month) and I want a new video game. Then you could say my birthday is (whatever month) and I want a new belly dancing dress. And then prompt Nat to talk about what month his birthday is and what he might want. Maybe that would help make the connection. It might be something where you have to prompt him with some suggestions initially but you could rehash the conversation a couple months later and see if he is “getting” it.

I think that when D is spoken to normally he only gets pieces of whats been said. There are some theories out there that people with autism actually hear things after a delay and that sets off a cascade of communication breakdown. The other thing I have to constantly remind myself to do is give D plenty of time to answer, even if the silence in between seems absurdly long. It’s amazing what he comes up with when I give him time to answer, and dont talk over or answer my own question.

— added by eileen on Wednesday, February 5, 2014 at 9:17 am

<3

— added by Susan Senator on Wednesday, February 5, 2014 at 9:19 am

When my daughter (16) needed new books this winter I didn’t just go out and select them for her as I usually would have. I looked through the Zappo’s site and suggested a few. When I stepped away she found some black Uggs and left them on the screen. I asked her if those were the ones she wanted and she said, “Uggs”. Well, I would have never known that Uggs were even on her radar! Every day she asked for the Uggs until they came in the mail one day and she ripped open the box. Luckily they fit because she hasn’t taken them off since.

But, you know, it makes so much sense! Stores are so completely stressful for her she just agrees to anything. We are now shopping for her birthday on Amazon. With her.

— added by Susan on Wednesday, February 5, 2014 at 9:40 am

I ask Charlie about what he wants, but he can’t articulate it. If I take him to a store and put him where I think he will be in front of what he wants, he won’t touch or point, even if it’s exactly what he wants.

I’ve tried telling him, just go get what you want – on the day of his birthday- but he can’t or he’s afraid to pick, maybe thinking I’ll say no, which leaves me feeling like the wicked witch.

As for the other things, I slow my speech. I try to wIt for him to answer even if it takes a long time, but I’m so impatient. I tend to fire question after question. It’s like I pick to get an answer. I get to a point where I am digging, like a dentist going after decay in a cavity. Searching, probing. And he hates it.

I’m trying to be content with making myself ask yes or no questions, when it’s really important, as it was on Friday. I use this format:

Are you in pain, yes or no?
Your head hurts, yes or no?
Your ear, yes or no?
Left or right?
Is the pain big, yes or no?

He had an ear infection starting. I noticed him knocking his head with his wrist. Thank god we found it before it really blew up.

— added by Janet bowser on Sunday, February 9, 2014 at 4:34 am

Susan – this is important and not just about birthdays. Although there is a birthday coming up in our house, too.

Kate – thank you so much for commenting. Your suggestion made me think about some things I can do in my family. I liked the way you approached the birthday scenario and can apply it to other things.

— added by Dixie Redmond on Sunday, February 9, 2014 at 8:53 am

To Janet —

Re:
“He had an ear infection starting. I noticed him knocking his head with his wrist. Thank god we found it before it really blew up.”

… and also that you classified his behavior as COMMUNICATION, rather than as just some new “tic” or “stim” to be behaviorally extinguished. I know too many children, teens, and adults whose communications (spoken, gestured, or otherwise) were treated as “behaviors” to be trained away.

— added by Kate Gladstone on Sunday, February 9, 2014 at 12:15 pm