Things have calmed down considerably from the chaos that was our life for so many years. We know that tantrums will end eventually; we know that some days are worse than others. We know that there are successes and there are failures. We know that our daughter is becoming who she is. We know that our son has his own unique set of challenges without the support of a label. The autism lurks around our house and most of the time it’s kept at bay, only triggered by tiredness, anxiety, hunger, lack of structure, transitions ... in other words, life.
I have, however, learned some global coping strategies for me and for our family.
For my children, deep, stretching exercise is absolutely critical to their ability to focus and their ability to regulate their own emotional states. We call it “getting the evil jujus out.” I often challenge them to a good run around the park in front of our house. They have been enrolled in formal sports activities since they were tiny because of their need for focused, large muscle, physical activity.
For me personally, yoga has been a tremendous source of strength. I find that the calm, breathing activities as well as the stretches help me center myself and, indeed, get rid of my “evil jujus.” I have introduced it to the children, but it’s slow going. They would rather be very active, and yoga requires concentration. However, they enjoy the stretching, so we do it in small bursts. Dion Betts (2006) has a very useful book called Yoga for Children With Autism Spectrum Disorders: A Step-By-Step Guide for Parents and Caretakers that we have found to be helpful.
Counting has worked so well as a coping strategy that we’ve used it pretty extensively. It is a dependable structure to our days. But we also have strong routines that we establish for consistency. At times, I will even ask the children how they would prefer we do things. The other day, I was fussing at Ray for not brushing his teeth—a sensory experience he does not enjoy. “What do we need to do to help you remember to brush your teeth? Would a reward work? A schedule? You can’t get out of brushing your teeth—what would help you finish it?” I asked. He opted for a visual reminder and a toothbrush that lights up that he can watch while he’s brushing. They crave structure, and as much as possible, I try to get them involved in the process of creating it.
I generally think through what it is that is going to happen, so that I’m very clear about consequences for their behaviors: “If you don’t get in bed by the time I count to three, you will not be allowed to play quietly for 10 minutes, and I will turn the light off right now.” “If you don’t stop arguing over the computer game by the time I count to three, I will turn off the computer.”
We’ve even used time as a measure to self-manage behavior. “You may have it for 10 minutes, and then it’s Ray’s turn.” “You may play on the computer for 10 minutes and then you’re done.” “You have 2 minutes to put as many things away as you can. How many things do you think you can pick up?” “How long do you think it’s going to take you to get dressed?” My kids love numbers, and so I use that love of numbers to help them control their lives. Of course, when they were little, I could announce how long things lasted, “Oops! 10 minutes is up!” Now, they can read clocks and I can’t get away with that as easily. But it’s helpful.
It’s important to know your child and set up consequences that he wants to have happen and things that he doesn’t want to occur. Know what you’re going to teach your children when you’re planning rewards and consequences. I learned this very clearly when my son was 3. He had colored on the walls in dramatic strokes—really expressed himself. I, of course, had my attention somewhere else. I was frustrated because I had told him not to draw on the walls. I informed him that when we make messes, we clean them up and that he was going to have to clean up that mess right now! He was thrilled! Scrubbing the walls was great fun for him. He turned a delighted smile up to me, and I realized that I was in trouble. Kids on the spectrum often love gross motor movements—actions that involve the whole arm, the whole body, things that build strength. Scrubbing the walls ... what a great activity! I knew that we were in for many more days of colored walls if I went down this route. I informed him with great sternness that he was not going to be allowed to clean this up because we do not write on the walls and he was going to have to sit there and watch! I commanded him to sit on the step and watch me commence to scrubbing. He cried, and I realized that I was totally doing a Tom Sawyer. To this day, Ray has not colored on the walls again and I sometimes offer for him to scrub walls as a reward for cleaning his room. Don’t know how much longer I can get away with physical labor as a reward, but it’s working for now. Ray is “allowed” to do dishes now and “allowed” to mow the lawn.
Brainwashing? You betcha! I have purposefully “allowed” the children to do things that I want them to do. They are not “allowed” to do dishes unless we have a quiet dinner. They will be “allowed” to help me clean the garage if they do not fight in the morning. It’s all in how you look at it!
Structure only works if you’re consistent with it. It is so tempting when you’re so tired to let little things slide. I have found that if I have the thought “Well, just this once ...” I’m in for it. “Just this once” is interpreted by kids as “Well, if I push/scream/yell/stim enough, I’ll eventually get my way. It worked once—it might work again.” Gambling addicts are hooked because of the rush that they get when they win finally, after so much frustration. It is the winning every now and then that makes the brain get hooked. I’m telling you: You’re in for trouble if you go the “Well, just this once” route.
That being said, there are lots of things that my husband and I are inconsistent on. Popcorn before bed—”OK, just today because we’re watching the finale of American Idol” Cleaning their room—”I’ll do it for you this one time, and then you’re responsible.” But for important things—homework, politeness, not hurting things—on those we remain consistent.
And there are lots of things that we’ve been pretty successful with because of consistency. My children do not run into traffic because of my absolute insistence on holding hands every time we cross the street. Even now, at age 8, Elizabeth and I touch in some way when crossing the street. The few times they tried to run ahead of me when they were toddlers, I would grab them, go back to the beginning, and try it again. There was one day we had to practice crossing the street 11 times before they realized that I was going to win that battle. Even today, they will be riding their bikes ahead of me as I walk, and they will stop at the corners because of the consistency of years of stopping for each other on street corners. It also helps that my children are slightly fearful of streets, a fear that I have encouraged. I notice every dead squirrel and express sorrow: “His poor squirrel mommy is so sad because he didn’t hold her hand.” I’m sure that someday my children will need therapy to explain their fear of traffic, but it’s something on which I am consistent.
My son and I had a major altercation the other night when we were working on his homework. I had picked him up from his afterschool program, and had asked, “Do you have everything?” He confidently replied, “Yup!” When we got home, he was missing his homework calendar. I was fussing at him and said, “You said you had everything!”
In tears, he replied, “Mommy, I don’t know what you mean by ‘everything’!”
I have to constantly rephrase things, break them down into component parts. Typical parental orders like “Clean your room,” “Get dressed,” “Are you ready for school?” or “Do your homework” get lost in the muddle of language that surrounds Elizabeth and Ray. I try to keep my patience as I break global ideas into specific tasks.
I sometimes have to take a very analytic path as well. My two are very sensitive, and any sort of reprimand can lead to an orgy of tears or completely shutting down. Ray has what we call his “scowl,” where he will go into a black, dark place where he cannot hear you nor respond to you. I have learned to ask them to tell me what worked and what did not. When they get in trouble, or don’t do well, or make a mistake, I have learned to keep them in the world by asking them, “What did you do right, and what happened to make it go badly? What else could you have done?” This strategy depersonalizes the emotions that they can’t handle, and uses their analysis for rules.
This has huge social implications of course. Other mothers and teachers use global commands all the time. “Be nice” is a rather global idea to get along. “Be polite,” “Treat others as you would like to be treated”: All of those rules for living have to be explained, broken down, and shown how they connect to other things. “That was not nice” is a firm statement in our house.
There are many children with high-functioning autism who, during moments of anxiety, will appear to purposefully stir things up. A friend of mine’s son, who is diagnosed with high-functioning Asperger’s syndrome, has been known to urinate on her curlers, smear feces, go into his brother’s room to break the toys, and to generally cause mayhem. Susan Senator (2005) discussed how her son would bite, pinch, and pull the hair of people he was around. In her memoir, Helen Keller (Keller, Sullivan, & Macy, 1903) shared how she became a “wild thing,” scratching and screaming at her family. Other children will thrash around, pound their head until it bleeds, or bite.
Such actions typically are done because the child needs some form of interaction, some form of stimulation, or some reassurance of ritual. It is easier to get attention and emotional responses doing negative things than it is to get positive attention. And you can almost be guaranteed a response with violent behavior—a predictable reaction that can therefore be counted on. And screams and yelling are more intense than hugs and smiles. When a child is particularly anxious or feeling disconnected, any attention can ground him. Tito Mukhopadhyay (2000) noted that he felt disconnected from his body and couldn’t understand what he felt, unless it was a very strong feeling. Some descriptions have included things like “flying apart,” or “disconnected,” and such feelings can bring out a “fight or flight” sensation. Susan Senator (2005) related how her son would have dilated eyes and rapid breathing. Strong sensations, such as deep pressure or strong emotional reactions can be the only things that children with autism feel keep them together—emotionally and physically. They are, in a sense, fighting for their lives.
This understanding, of course, doesn’t help when you or someone close to you is the one being bitten, screamed at, or otherwise abused. Although ignoring some behavior can reduce its impact, often the child will just try harder for a reaction, and when someone is being hurt, you cannot ignore such behavior.
There are, however, a variety of other choices for you. You can:
It is important sometimes to “Declare victory and get out,” as Susan Senator (2005) said in her memoir (p. 217). Every year, month, week, and day will bring new challenges. The need for consistency, clarity, and structure does not change, but the way in which you make those happen will change, based upon the needs of your child. Be flexible, enjoy the ride, and know the incredible difference that you can make in the life of your child.