People with autism claim the repetitive and stereotypic behaviors they partake in are used to control their body's reaction to their environment. They describe the high levels of stress and anxiety they experience as a reservoir which fills and empties during each day completely dependent on the experiences they have. The reservoir is rarely totally empty because their level of response to input means that they are constantly overwhelmed by the environments in which we feel completely safe. As the reservoir fills, they gradually lose their ability to communicate and socially interact with us. Their repetitive and stereotypic behaviors increase as they are used to create endorphins to decrease the body's response to the anxiety. This lowers the level of anxiety. When the reservoir (or anxiety) is low, communication skills are higher, social interaction skills are more accessible and the stereotypic behaviors decrease.
Input that leads to anxiety comes to the body from three different areas:
1. Over stimulation from the environment (a threat to ones safety). May come from sensory stimulation from the environment or from their reaction to the emotional state or acceptance or rejection of other people in their presence.
2. Over stimulation from within: This can be due to emotions: both positive (pleasure, excitement), or negative (anger, fear, anxiety, shame, failure). They also may indicate a physical need such as hunger, thirst, pain, or a need to sleep. This stimulation may also be due to a gastrointestinal or medical problem or may be connected to reminders of memories of past experiences that were negative in one way or another.
3. Boredom: they have very busy brains, which must be kept busy at all times or they are in trouble. Each individual uses a variety of different coping skills to keep this brain engaged.
We must fully understand and accept that any behavior that a person on the autism spectrum uses is a solution to a problem in the moment, no matter if it is what we see as a good behavior or inappropriate. We must also realize that the environment they are experiencing is completely and totally different from that which we are experiencing because of their response to sensory stimulation. Only then can we begin to work effectively with these people. Paying attention to the times that they take part in protective behaviors allows us to determine the level of anxiety that they are experiencing from one situation to the next throughout the various times of the day. It also will allow those who work with individuals with autism to understand their level of anxiety. Once you recognize that anxiety is occurring, observation of the environment will allow you to determine which of these three situations is occurring.
The Impact of Anxiety
When people with autism experience too much input (from the environment or from within) or not enough input (through boredom), they reach a point which they call survival mode. At this time they will resort to their most effective coping skills to decrease the impact of the input/lack of input on their body.
Survival mode indicates that the buildup of anxiety in the body has reached a point where the person with autism has to deal with it in some way or else they will go into meltdown (extreme out of control behavior often defined as "tantrums" by the rest of us but actually experienced as panic anxiety attacks.) as the reservoir overflows. Allowing those with autism to use their coping skills, in whatever way they choose, gives them the opportunity decrease their response to what is happening to their body and allows them to return to a point where they can concentrate and learn. Caregivers should recognize that the use of these repetitive behaviors are all indications that the person is experiencing discomfort in the present situation and requires coping skills to lower their level of discomfort. It is imperative that anyone who is working with those on the spectrum is willing to listen: listen to their voice, listen to their body language and listen to their actions. If we listen carefully we can help them avoid reaching the point of panic anxiety. If we ignore their messages and insist that they listen to us instead, we increase their level of anxiety. Changing the environment to make it more productive for those on the autism spectrum will result in a decrease the use of these behaviors. Acknowledging their discomfort in the present moment also reduces the anxiety/ agitation level that they experiencing.
Coping Skills are behaviors which are developed to help the person with autism deal with the stress of the environments and people they are dealing with at a particular time. Coping skills allow them to take part in regular activities at home, at school and in the community safely. One of the major goals when working with people with autism should be to help them develop coping skills which are socially appropriate and can be carried out in a variety of situations. These are something that the person with autism has to have complete control over at all times, if they are to be effective and last a lifetime.
There are five different types of coping skills used by people with autism. They include
2: the use of repetitive and stereotypic patterns of behavior
3: focusing so deeply on an activity or a subject that you can block everything else out.
4: retreating into one's fantasy or imagination.
5: overload to the sensory system
Examples of withdrawal include leaving the room, pulling away from the physical contact of other people, covering ones ears, turning off lights, removing ones clothes and going up on ones toes when one is walking to reduce the tactile input on one's feet. Repetitive behaviors can include pacing, rocking, twirling ones hair, rubbing ones hands over a surface repeating a word, phrase or sentence over and over, basically anything that one does a number of times in a row. Retreating into fantasy is much like day dreaming though at a much more detailed level than that of most of us. Focusing usually includes favorite topics that they return to which they focus on so completely that they block out everything else that is happening around them. Higher levels of anxiety lead to the use of overloading one or more of the sensory systems to shutdown the system. Examples include screaming loudly, head banging or self mutilation, staring into continuous movement or bright light, smearing feces or drinking Tabasco sauce.
The most important thing we must accept about coping skills is that we cannot take one away from a person with autism without providing an alternative, or having them come up with an alternative. This is why behavior modification programs are not very successful. Yes, we may be able to eliminate one behavior through the use of positive and/or negative reinforcement, but it is going to be replaced by another because they are used for a reason: protection. Placing a child or adult in an environment which pushes them to the point that they need to use their coping skills, and then punishing them for doing so with a time out or other sort of punishment is also not very effective and actually should be considered a sort of torture.
Levels of anxiety and agitation are demonstrated through the use of a variety of different behaviors which are unique to each individual. The following are the different behaviors are examples which allow us to measure the level of anxiety/agitation a person may be experiencing at a certain moment in time. This list is only an example and not to be taken literally as the way you should expect any person to react. A list of this type should be created for each person you work with over an observation period so that you and others can be clear as to what level of anxiety the individual is experiencing.
Low agitation: is able to concentrate on whatever activity that they are involved in for long periods of time. Able to follow directions and complete tasks. Calm, can be still or involved in an activity. Speaks in a low tone and shares information with others. Looks directly at their work or at another person. Responds to you the first time you say something. Follows directions when given in a soft voice and given time to respond. May not appear to be listening, but follows through if given the time. Initiates a variety of activities and explores the world. Asks for help when needed. May touch other people gently.
Solution: not needed. This is when those on the spectrum are not only able to do things on their own the best but also is able to learn and engage with others. Our goal should be to have anyone with ASD at this level as much as possible each day.
Buildup: Rising agitation level: Interactions and directions take more time and effort for them to respond to, but they will respond if they are repeated or perhaps after being given a tactile prompt. Will solve their problems on their own with no input to others, which includes leaving to do what they needs to do. Will tell you what they are doing if you ask. Will find or obtain their own objects needed for calming. May lean back up against another person for deep pressure or takes their hand or arm for comfort. May use a whiny voice to explain what they wants. May have a hard time sitting in one place for any length of time. May move away from the stimulating areas of the room. May use peripheral vision to check out what is going on. Body may become tense. May cover their ears as noise level increases. Echolalia may appear.
Solution: Acknowledge what is happening for them in the present moment and tell them that they are doing well in spite of the discomfort they are feeling. Respond to all of the communication that they are sharing with you (verbal, body, gesture's, behavior) and redirect them to new activities. If possible reduce the environmental stimulation they are experiencing in any way you can. Increase the level of mental stimulation to ensure boredom is not a factor.
Survival Mode: Medium agitation level: Very low response to anything that anyone else says. Voice becomes loud and high pitched. Repetition of comments gets more and more demanding as agitation increases. Gives orders to other people in the room. Have a hard time staying still or sticking to one activity for any length of time. Reaches out for others for comfort such as holding the hands of two people when on the field trip. Body movements such as running become more awkward. May squeeze their head with both hands. Hands may be clenched. May walk on toes. Needs objects for calming and may not be able to find them themselves or get very upset if they are misplaced. Body becomes very tense. Body may shake. Repetitive behaviors will be used such as pacing or rocking or flicking ones fingers in front of ones eyes.
Solution: Redirect, redirect, redirect. At this point acknowledgment will only make things worse.
Survival mode: High agitation level: Needs to have control of everything and will take it with force if necessary. Charges through things and people without appearing to see them. Will push you away. Cries. Screams. Hits themselves on their head. Bites themselves. Hits others. May verbalize a lot of repetition or contradictory statements "I want to...."I don't want to..." The language is not meaningful, but part of the agitation. May throw themselves on the floor. Little response to input from others. The use of verbal or other means of communication has decreased significantly. Lack of cooperation on tasks or activities. The use of repetitious behaviors will increase significantly. At this point they are very close to a meltdown. It is imperative that people who are with them when they have reached this state listen to them: to their words, to the pitch of their voice and to their body language. Any attempt to control them will push them over the edge into meltdown and may result in aggression towards you. Although listening may appear unreasonable at times, this is what they need. They are incapable of listening to you any more.
Solution: Allow them to have the time and space to calm themselves. Trying to teach anything at this point is likely a waste of time.
Shutdown: Very calm and still. Peaceful. May appear not be present in their bodies. May appear to look through you.
Solution: Although this may appear to be a place we want them to be in it's not a safe place. Bring them out of it with input that matches their needs: tactile, auditory, visual, or smell. Using the sensory system that they chose to us for their calming behaviors is likely the best choice.
Meltdown: Meltdowns typically look like severe tantrums but they are actually panic anxiety attacks if you compare them to the definition of these attacks as found in the DSM IV (The Diagnostical and Statistical Manual of the American Psychiatric Association). They may include aggression to others and to themselves in a variety of ways. In this state they are out of control of what their body is doing. They will not be able to take in information or learn while in this state so it is a waste of our time to try and teach them anything at this point.
Solution: The best treatment is to allow them to withdraw to a quiet place until they can calm themselves down. Each person will have their own calming techniques. It is important that we respect them and allow them to use them. Any input from anyone else at this point will only cause more distress.
Anxiety can be due to positive and negative experiences. When creating a list like this be aware that changes in the anxiety responses often occur as a person matures, so there may have been others in the past, and there will be new ones developing in the future.
It is very important that anyone who is interacting with anyone with autism does NOT take any of their behavior personally. This is NOT about you. It's about a child or an adult dealing with a body that is not working for them as well as yours is for you.
When the input from the environment is too high, people with autism may use a coping skill that allows them to block out all incoming stimulation called shutdown. At this point they may appear to be very calm. Shutdown is likely the least understood stage anxiety that these people experience. It feels good to them so they try to stay in shutdown as much as they can. However, it is not a safe place to be.
Calmness or pleasantness is when I feel nothing except numbness and peacefulness. I like that feeling very much. It's like a sleepy feeling, I think. I try to keep numb and calm. I function best when I am this way. It may sound terrible, but trust me it's very good for me.
Scott McGifford, 1998,
When people with autism are in environments that are very stimulating and appear to be very calm, they are likely in shutdown and will respond differently to your instructions or requests. Shutdown is not conducive to learning as information is not going into the brain. It is also a dangerous place to be as they do not register what they hear, see, feel, smell or taste while in this state. They also do not feel other messages from their body such as hunger, pain or the need to go to the bathroom which can affect their health and how they fit into society. We have lost people on the spectrum while they are in this state as they walk in front of moving cars oblivious to the sound or the sight of them coming. For most of those on the spectrum, appearing oblivious to sensory input while in shutdown has nothing to do with their willingness to cooperate or their ability to pay attention. It's a place they end up because of their extreme response to sensory input and their need for protection in the environments we place them.
Many of the treatment modalities that have been developed for people on the autism spectrum are based on having a person go into shutdown. This is because we have the mistaken belief that a lack of behaviors is an indication that a person with autism is becoming more normal. The psychiatric medication Haldol is one example of how we are confused when we measure success in autism by a lack of behaviors. Haldol is, by the way, the only psychiatric medication that has passed the second level of testing required for scientific validation for use with people on the autism spectrum. The rest of them haven't even made it this far.
Haldol is claimed to be effective because the individuals it was tested on sit quietly after it is administered. If you talk to people with ASD who have taken Haldol you get an interesting perspective into this stillness. They claim that the medication makes them so nauseas that they dare not move in case they throw up.