After much experience trying many things, I intend to post the ones that have really helped and really worked for us in dealing with Life With Autism.
Autism has changed our lives, sometimes for the better. We have had to become more organized, learn more patience, and have more tolerance. The areas where Autism is pronounced, others in the family have had to be even better at, such as learning to be flexible.
In Praise of Dry-Erase Boards
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I have developed my flexibility by implementing a visual schedule for our sons, as a learning tool and as an anxiety reducer. This began in preschool with the use of little picture icons with velcro attached that the teacher used to explain the day to the children. Later it became a dry-erase board that my son created at summer camp and carried with him. We even put up a huge dry-erase board on the wall in our hallway, to manage the many therapists and schedules for his ABA treatment.
This method is something I would now consider to be essential in helping someone with Autism to regulate themselves and for others to use to help them get through a day that often can include unwelcome changes, deletions, additions and other reasons for flexibility that the Autistic person doesn't seem to have.
I believe that the Autistic person does have some flexibility in them, but it is difficult to see this because of the sensory and other brain issues that make being flexible harder for them to do in real time.
I think that flexibility has two parts:
1. Anticipation
2. Preparation
Anticipation of an event allows a person to mentally and physically "brace themselves." If you are going to the State Fair on a sunny day, you will want to bring sunglasses, a hat, sunscreen, bug repellant if you are staying late, and perhaps a thin rain poncho, a water bottle and some hand wipes. This is to help you with dealing with the natural elements of the day that you will have less control over in the State Fair grounds than you would at home. If your senses are unusually sensitive, as in Autism, then any situation you have less control over might bring pain, discomfort, and anxiety.
Preparation is the way to deal with anticipation of an event with less anxiety.
Research Shows a person with Autism is less able to recover from Anxiety
If a person has less ability to recover from anxiety, then avoiding the anxiety in the first place is paramount.
The worst possible scenario for anyone is when they can only anticipate pain, surprises, being startled and unprepared, and even worse--anticipating being startled by pain.
What I think every Autistic person wishes others would know:
My theory of what its like to be an average Autistic person away from home (at school, on an outing, in the community, at work) without this kind of help, is that it is a never-ending feeling of anticipating being startled by pain.
Putting a schedule on a dry-erase board allows for changes to be written in as soon as the caregiver or teacher is aware of them, to allow the Autistic person to brace themselves. Any pain can be less by not having it be startling. When you have a hair-trigger sensory system, that doesn't return to normal easily or quickly, being able to prepare can be a life-saver. (The tendency for the entire day to be ruined from one unexpected change is less likely.)
It is a natural human tendency to want control over the things that matter to them. Control isn't just for control's sake. Sometimes people think this is about power, but what is power other than the ability to control the elements of one's day? Research has shown that even very painful events seem less painful if there is a sense of control involved.
Bracing isn't the same as wincing when you know a person is about to pinch you or give you a shot. This is the sense that you know you can handle whatever it is, painful or not. The idea in your head has to be that "I can handle this." In fact, people who cut themselves on purpose do it with the idea that the pain is under their control. Whereas in other areas of their lives, physical or emotional pain is completely out of their control. If you feel that you won't be able to control your reaction to the event, you will be more anxious just from that feeling.
So there is the event, and your reaction to the event. If you know your reaction will make things worse, then you have twice the anxiety, will require twice the control over yourself, than if you are comfortable with the feeling that you can handle this event.
If your senses aren't reliable, and your ability to control your reactions during events as they are happening is minimal, then your anxiety level can soar.
Anything you can do to anticipate and prepare in a functional way will help reduce anxiety for someone unable to do this for themselves.
In Praise of PRIMING
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We do something called "priming."
Priming can be doing a "dry run" of something where a person's behavior is important.
It can be role-playing.
It can be taking a tour.
It includes reading about something in a book,
seeing something in a video,
writing a story about it,
journaling it,
taking pictures,
singing a song about it,
putting it on a calendar,
on a To Do list,
on a Schedule.
Everyone does this. But people with Autism really need this. They can't just do it in their heads, or hope to adjust as things happen in the moment. They need more time, and in the moment, there is no extra time. Planning ahead is all they have.
In Praise of TIMERS
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We also make good use of a Timer.
We started by timing everything we do. Mom did this mostly, then we timed important things like chores. This makes arguing about them much more realistic. :D
Autistic persons are often "Lost In Time." They have a very hard time telling time, and sensing the passing of time, and estimating time, because time is a rather abstract concept, and abstract reasoning is often not their strong point.
We made an investment in a professional-looking stopwatch and a book about stopwatches.
Once we knew how long things really took, we could set the timer, and say we were leaving in 15 minutes, and REALLY MEAN fifteen minutes! What a relief.
The timer became a "self-regulating" mechanism. The timer also takes all the heat off Mom, because Mom can blame the timer for many things she used to get blamed for. Like periods of waiting. Autistic persons hate unplanned waits. They have very few resources for entertaining themselves while doing un-planned waiting.
Mom never takes advantage of this sytem by cheating and changing the timer when no-one is looking. I thought you were thinking that! But that is really counter-productive, because the goal is to teach the Autistic person what "fifteen minutes" feels like. Not to make his senses and internal sense of life experiences even less reliable.
A lot of these ideas came from and are described in the book:
"Activity Schedules for Children with Autism: Teaching Independent Behavior" by Lynn E., Ph.D. McClannahan , Patricia J., Ph.D. Krantz
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