It is not practical to try to give a single set of instructions for every family in every home with every child with some degree of autism. Not only is each child a unique individual with distinct requirements, but there are also many differences among families, homes and cultures that would make this task impossible.
However, it can be helpful to clarify certain principles about the effects of the environment on children with autism, which parents can consider and modify for their own child, home and culture. That is the purpose of this article.
Is your home a happy home? Is there a high level of stress? Do the people who surround your child tend to be uncomfortable or tense? Or is the predominant attitudinal tone one of ease, security, warmth and good feeling?
I once posed this question to a woman named Carol, the mother of two children with autism. Her reply was “Oh my gosh, I have so much to take care of, do you mean I have to fix that too?” She heard my question as adding to a long list of “shoulds” and “have to’s” which already overwhelmed her. She saw the issue of attitude as another yardstick with which to measure herself and come up short. She was already feeling strained, stressed and barely able to cope.
Carol had very understandably fallen into a trap. In her beautiful effort to do everything for her children, she was not focusing on herself and her own good feeling. She was exhausting herself doing all of the things that she was sure had to be done. She was more and more stressed and operating on the very edge of her ability to cope. The tension and irritability that resulted could be perceived in her voice, her facial expression, her body posture, etc.
How was Carol’s growing stress affecting her sons, Sean and Jonathan? Sean was doing the opposite of what he was asked more and more frequently. Jonathan was increasingly involved in his self-stimulating rituals. However, as Carol focused on reducing her level of stress and creating more time for relaxation, she changed the attitudinal dynamics in the family. Almost immediately there was a corresponding change in the behavior of her sons. Sean became less oppositional, and Jonathan grew more interactive.
Some people believe that children with autism are so encapsulated that they do not have any awareness of the feelings of the people around them. I do not believe this is so. For 30 years, I have had the opportunity to observe hundreds of parents and professionals work with hundreds of children with autism. After observing these adults, I generally ask them detailed questions about their attitude and comfort level. Patterns are often evident immediately.
In my experience, children in proximity to adults who describe themselves as stressed or uncomfortable tend to react with one or more of the following behaviors: an increase in either the frequency or intensity of self-stimulating rituals, more oppositional and challenging behavior, decreased responses to requests, decreased eye contact, decreased smiling and more neutral facial expressions. I have often observed children whose motor planning ability appeared to reduced (which is generally the case when a child is stressed) and observed differences in speech, such as more repetition, less articulation, more “psychotic” talk, etc. Many children also appear more agitated and stressed when they are in the same room with adults who describe themselves as uncomfortable.
Overall, the children I have observed have tended to decrease their social interaction when the adults who were with them felt stressed or uncomfortable. The children appeared less motivated to interact, and some children even indicated this through such actions as leaving the room, covering the adult’s head with a blanket or putting the adult in a corner with their back turned! One girl recently packed up the bag of a highly stressed new therapist, put the bag outside the teaching room, then returned to take the therapist by the hand and escort her out the door, then returned to the room and closed the door, leaving the therapist outside!
In the course of my experience training parents and professionals to develop more clear, comfortable and positive attitudes, I have also observed many children with autism respond in remarkable ways to changes in the attitude of their parents or teachers. For instance, on innumerable occasions, when the uncomfortable adult left the room, and was replaced by an adult who felt relaxed and comfortable, the child’s behaviors and responses quickly reversed (sometimes within minutes), and the child became more socially interactive, motivated, etc. In many cases this occurred even when the previously uncomfortable adult returned, feeling more relaxed and comfortable. The children often appeared to me to be quickly “forgiving” of the previous discomfort.
Here are some suggestions to help create an optimum attitudinal environment for your child:
1) Start with yourself and your own level of emotional comfort. That is all you really have direct control over (yes, you do.) If only one person in the family system becomes more comfortable, the entire family system is affected.
2) Become more “selfish”. This seems like an odd thing to say. Prioritizing your own physical, mental and emotional well- being is one of the most important things that you can do for your family and for your child with autism.
3) If you have no time for yourself, find a way to get time. Let go of something. Ask for support. Try asking family members, friends or neighbors to relieve you by spending time with your child. Hire a helper if necessary. Make this a priority.
4) Consider getting help from a professional counselor for yourself, or with your spouse. This is especially important if the stresses and tensions are high, or if you find yourself severely depressed, frequently enraged (once a week versus once every few months), or hitting (or wanting to hit) your child. There are many styles of counseling. Find someone who will help you deal constructively with your feelings and change your feelings – not simply ventilate them.
5) You don’t have to be in extreme discomfort to benefit from some form of counseling. Consider getting support if you are generally comfortable, but feel that you could be enjoying yourself and your family more.
6) Notice how you feel after you talk to friends and acquaintances. If you find that you feel discouraged, less confident or tired after speaking to certain people, then consider decreasing your time with them. If you notice that you feel more positive, more confident or more energized, after speaking to someone, then treat that relationship as a valuable resource. Spend more time with that person. Prioritize relationships that help you feel empowered and inspired.
7) Minimize your child’s contact with extremely tense or uncomfortable people. The people that your child experiences will help to shape his/her beliefs and feelings about interacting with people in general. Do your best to surround your child with comfortable, happy people. Consider eliminating stressful environments and people from your child’s life, at least temporarily while your child is developing skill and confidence with people. Consider coaching or training the people who come into your home, to help them be more comfortable with your child.
8) Do not get uncomfortable about other people’s discomfort. Your child may be more influenced by your attitude than that of other adults. If someone is uncomfortable, focus on accepting them and realizing that they are doing the best that they know to do. If you practice this and get good at it, you will feel better, and interestingly enough, the people in your environment will be more likely to feel relaxed in your presence. All of this will tend to give your child a more positive, relaxing environment.
Many children with autism have sensory differences, particularly hypersensitivities involving one or more senses. It is a good idea to be aware of the sensory environment and how it might affect your child.
Background sounds that most people tune out might be at the forefront of your child’s awareness. Background music, machine noises, traffic, wind and nearby conversations might all be drawing your child’s attention. At those times, your child might make less eye contact, and be less focused or less interactive. As much as possible, find ways to minimize the background noises – especially when you would like to engage your child. Turn off the television and ambient music, run the dishwasher after your child goes to sleep, consider placing sound-reducing materials in places where you would like to have focused time with your child.
There are some children who are so sensitive to certain sounds, that they will appear disturbed, tantrum, whine, cry or cover their ears, when these sounds occur. If this seems to be the case with your child, it is important to notice whether she/he is sensitive to particular sounds, volumes or pitches. You do not have to eliminate these sounds altogether from the environment, especially if it involves the sound of someone’s voice.
Try introducing the sounds as part of the play when your child is relaxed and having fun. Give your child control over the sound by linking it to one of their actions. For example, Ryan loved to be tickled. He was also sensitive to his Dad’s laughter when he laughed loudly. So his Dad tried never to laugh loudly. I asked Ryan’s Dad to increase the volume of his laughter during the tickling game. When Ryan said, “tickle,” he got the tickle and the laugh. Then Dad would stop and wait for the Ryan to say “tickle” again. When he did, he again got the laughter and the tickle – both now associated with fun and control. Ryan continued to ask for “tickle” and became less sensitized to the sound of loud laughter.
Visual over-stimulation is also a consideration. In many of the classrooms that I have visited in the United States and in the United Kingdom, the walls are literally covered with words, letters, objects, colors, posters, etc. The belief is that the children will learn latently by looking at the walls, even if they do not look at the teacher. This thinking can be counterproductive for children with autism. Eye contact tends to decrease in such a visually busy environment. The environment competes with people for the child’s attention. In places where you would like your child to pay attention to people, minimize the number of items on the walls.
Lighting can also be important. Fluorescent lighting (unless it is a high speed ballast) is a pulsating light. Many children tire quickly, show diminished eye contact and have shorter attention spans in rooms with fluorescent lights. These children do better with incandescent lighting. There are now high-speed ballasts for fluorescent lights that minimize the pulsating effect, but it is not yet clear if they are effective. We are also not sure about the impact of compact fluorescent bulbs. Sometimes, it is best to try different lighting, see how you feel with it and how your child responds.
In addition, colors can have an effect. Observe which colors your child notices most and use these colors judiciously. For example, suppose your child pays more attention to bright primary colors. You might remove items with these colors from the walls and eliminate them from your child’s wardrobe, since your child may pay more attention to the walls or their own clothing than to people. But when you want your child to pay attention to you, try wearing a hat, shirt or face paint in the primary colors or introducing new activities using these favorite colors.
The House as a Minefield
How often do you find yourself saying, “No – don’t touch that!” “Don’t go in there,” or “Leave that alone!”?
If you are saying these things frequently, then the environment may be a kind of ‘minefield’ for your child. Children who are intrigued by strong reactions from their parents will repeat the unwanted behaviors to get the interesting reaction. Other children, who are more prone to withdraw, will tend to explore and play less and be less motivated to interact with you, if you frequently tell them “No”. Either outcome is undesirable.
Consider locking the items that you do not want touched in drawers or closets or placing them in storage for a few months while you work to gain your child’s cooperation. Again, consider your own comfort and be reasonable.
One family displayed their valuable china dishware in a glass cabinet. Their daughter was becoming more and more intrigued with these items. The more she tried to explore these fascinating and special objects, the more she was told “No”. The more she was told “No,” the more interested and determined she became to get her hands on the china.
To break the cycle, I advised her parents to put the china in storage for a few months and put some inexpensive dishes that they did not care about in the cabinet. They let their child handle (and drop) a few of those dishes, and they had no particular emotional reaction (“charge”) to these events. Having thoroughly investigated the dishes, and in the absence of any strong, exciting reactions from her parents, the girl quickly lost interest in the dishes. She showed no special interest, even when the good china was returned to the cabinet some months later.
In parenting a child with autism, establishing communication and rapport is a primary goal. Locking valuable or unsafe items away can eliminate situations where you have to say no or discipline your child, freeing you to interact with your child in more comfortable and user-friendly ways.
Locks can be seen in two ways. Some people associate locks with jails. Others see them as protection. Consider viewing locks as a means of making your home a safe place for your child’s exploration. Notice whether your child experiences tension with his/her siblings over the siblings’ prized possessions. If this happens, consider giving your other children a special way to lock up their valuable items.
Also, you must control access to reinforcing items and experiences. If your child can access these things freely, they will have no need to communicate or to cooperate.
Consider creating a playroom in your house, or at least having an area where you can encourage your child to focus on you and whatever you present to them. The playroom could be a bedroom at night and a playroom during the day. If you do that, I recommend using a mattress on the floor as the bed, and removing it during session times.
If your house is large enough, it is ideal to dedicate one room to be used for your work with your child. The room is designed to enable you to be the focal point and to provide an environment in which you can most easily use your time with your child to help him/her develop communication and interaction. In a special playroom, there are no distractions drawing your child’s attention away from you (or yours away from your child). There should be nothing in this room that you have to say “No” to.
Here is a list of suggestions about the playroom:
1) For most children, a room about three meters by three meters is sufficient. Size is discretionary – if your child is small and the room is really large, it can defeat the purpose of trying to create a more focused environment. If your child is large, you will both want more space for movement.
2) Minimize visual distractions. Put the shelves up high so that toys and other items are out of your child’s each and not at eye level. Your child will then need you to reach them, thus providing more opportunities for communication. Do not use patterned wallpaper. Paint the walls a light, neutral, pleasing color.
3) Include a table that can be used as a desk, and a chair in the room. We recommend using a table that is standard table height, and a Stokke Tripp Trapp chair that can be adjusted for your child as they grow. There are a number of advantages to this kind of seating arrangement.
4) Consider putting a covering on the windows that admits good light, but eliminates the view outdoors and decreases your child’s interest in staring out the window. The rough Plexiglas that is used in shower stalls is ideal.
5) If possible, choose a room with an adjoining or nearby bathroom, so that trips to the bathroom don’t become long and distracting expeditions.
6) Use comfortable lighting.
7) A padded floor is safer for certain kinds of play. This will also be more comfortable for you, as you may be spending time on the floor or on your knees. Consider putting linoleum over padding. There may be spills – and it is nice to not have to worry about wet carpet.
8) Be sure to have the items that you will need in the room at the beginning of every session, such as food, drink, toys, books and activities that correspond to your current curriculum. If your child asks for something, you can then run to the shelf and get it, without having to leave the room and disrupt the session.
9) If you are running a program several hours a day primarily using the playroom, consider some means of observation – either a one way mirror or a CCTV or both. One way to do that is to take the existing door off and store it. Mount a new door and cut a window opening into it. Mount a one way mirror. (Be sure to use tempered glass or some form of safety glass.) A listening device can be installed – even a baby monitor. If you use CCTV, this can be wired into your house television. Some people can switch on the playroom action in any room that has a TV. Also, this allows for video recording of sessions.
One final, but very important consideration is to make the environment that you create for your child a comfortable place for yourself too. None of these suggestions are rules. They are guidelines and basic principles that you can adapt for your child, yourself and your unique family and cultural circumstances. Have fun!