This BLOG is the first of a three-part series about some of the efforts and techniques that helped my son, Andy, and me as we lived through his successful struggle with autism. Perhaps reading about them will encourage others to try them (if they have not already done so). Even better, perhaps some of you will turn to the Readers Help Readers page on this website and share your successes with others.
When (I thought) Andy and I had finished the first complete draft of our book about life with his autism, I sent a small sample of it to Temple Grandin, the well-known advocate for people with autism. I asked for her comments. As soon as she received the sample, she called me. She told me several things she thought might improve the book. She repeated one suggestion again and again. I must include loud and clear information about “what worked.” Without that, she said, all the rest of the story would be useless. I reviewed the book with her suggestions in mind and agreed. Indeed, I really must include specific and clear information about actions and techniques that helped Andy. I needed another chapter. As I wrote that chapter, I realized the information in it belongs on this website.
Of course, what I present in these BLOGs cannot be a complete guide to all attitudes and behaviors, all techniques that work for all people with autism. There can be no such guide, because—like all the rest of us—all people with autism are unique individuals. No two are exactly alike, and no two can be treated in exactly the same way in every situation. These are things that worked for Andy and me. As we walked our walk, I saw they often worked for others. I hope many, if not most, work for you.
Let’s start out with the most important first: LOVE. None of us is loveable all the time. Nor will your “special” person be loveable every minute of every day. Maybe not even, in some phases of their life, most of the time. But chances are you will love them through all of those phases too and—hard as it can be—you must let them know you do. Tell them so. You can tell them you do not always love the way they act, but you always love them. If they will allow you to, hug them, hold them, give them a pat on the back. They may act annoyed, they may repulse or reject your action. But they may welcome it even so, and it may help them to believe you love them despite their negative behavior. It cannot harm them.
Give them PERMISSION and PRAISE to be who and what they are, just as they are. It may be they will never be a “normal” person. That does not matter. You don’t even need to mention it. But there is some way they excel. Perhaps they always color everything blue. Okay. Tell them they color blue better than anyone else; it’s why they are special. You can suggest, in another conversation, maybe they’d like to color with red also, and be a star with two colors. It may not work, but it’s worth a try! If it doesn’t work, just say, “It was an idea; that’s all. I like your blue cows,” and move on.
One thing I’ve observed in virtually every experience and account of life with a person with autism: they have a strong need for CONSISTENCY. Consistency in virtually every aspect of life: time, food and drink, toys, placement of furniture, fast food venues, clothes…. the list goes on and on. If you serve snacks at 10:00 am, you must not serve snacks at 9:45 am or even at 10:20 am. If apple juice always is the beverage at snack time, you must not run out of apple juice and serve grape juice with snacks. If you must do something like this, you know that a tantrum almost certainly will occur. Don’t move the living room furniture around while they are at school. If you really want to move the furniture, ask your child to help you. You might tell them you value their opinion about where to put things. Ask them if they think the new position of the rocker looks okay. If they say “No,” ask them where they suggest you put the rocker, and (we assume you don’t like any of their ideas) tell them why you think your idea is better and say, “let’s try it like this, for now.” If you’ve not been there, you may think this is not a big deal. If you have been there, you’ve got stories….
If you move to a new home, an unsettling experience for anyone, take special measures to ensure the transition is as stress-free as possible for your person with autism. You may need to arrange most of the furniture in your child’s new room (it’s not safe to put the bed against the radiator), but even a child with autism may be able to arrange toys and books in some semblance of ORDER. When they do so, they not only gain a sense of responsibility they gain both a feeling of control and the knowledge of where their possessions are. If the result turns out to be too chaotic, you may be able to “suggest” a more orderly placement of items. When this is too traumatic immediately, it may be possible after a few weeks, especially if you introduce the concept by saying, “I noticed you had trouble finding your favorite dolly. Maybe if you move the dollhouse over here by the dresser it will be easier to find dolly and her dresses. What do you think?”
TIME OUT can be a relief from a stressful situation for almost anyone, when it is immediate and brief. Depending on the person, it can be either in a separate room or in a room with other people. If, for example, the person is afraid of being alone, a separate room is obviously not a good idea. But if the person cannot stop interacting with the other people in the room, it is best if they can be separated from others. No Time Out should last more than five minutes, even fewer for a three- or four-year old.
You are an extremely important person in the life of this person with autism. Be sensitive, be sensible, be sensational!