The Reality of Severe Autism (pt 3)
By Nathan E. Ory, M.A.
Coping with the reality of severe autism:
General concepts for supporting emotionally fragile individuals who display maladaptive patterns of adjustment. How are care providers to support a person who is not connected to others, who lives in-the-immediate moment, who reflects and magnifies other’s emotions, and who has little continuity of experience?
3. Defining and achieving realistic expectations.
A. Caregivers are responsible for maintaining achievable expectations.
The goal is to constantly “set up” successes so that the individual will obtain frequent positive feedback. The goal is to constantly remind the person of positive expectations, “rules” and both positive and negative consequences of their actions as a definition of their boundaries.
Remind them as a means of letting them know that they will be kept safe, and will not be allowed to go out of control. In this manner the highest possible expectations must be maintained at all times. But, it is the caregiver’s responsibility to ensure that the individual will actually achieve these expectations. It is the caregiver’s responsibility to set up interactions with pre-rehearsal so that the individual will not display random, regressed, or out of control behavior.
If the individual “tests” and does not receive consistent, expected limits and boundaries, they may become “lost” and immediately regress into out of control actions. For the “unattached” person who lacks a sense of personal continuity, unstructured interactions tend to be “out-of-control” interactions. If they are allowed to go out of control, “disconnected” individuals act as though the feeling of being unsafe, unbounded by expectations traumatizes them.
The interpretation of these actions is that the individual has no internal consistency from which to meaningfully organize his/her own behavior. The interpretation of these actions is that the individual is experiencing a post-traumatic-stress like level of arousal, anxiety and panic.
These individuals may feel out of control when they come up against expectations for appropriate behavior that are not consistently maintained. The function of the individual’s regressed and out of control behavior is to have someone take control over his or her behavior.
These individuals “go out of control seeking control.” This is often the reason why behavior rapidly escalates to such an extreme, often involving severe self-injury, extreme language, or extreme risk to others. For a highly aroused person with a limited sense of connectedness or continuity, any external control, no matter how negative, is less aversive than and preferable to the experience of being out of control and lost in the VOID.
B. How to break reactive, maladaptive patterns of adjustment and “set up” a person for success.
In the short term, the goal is to develop in the individual a “mechanical” adherence to “social rules”. In the short term, the goal is to cause the person to become successfully dependent upon their caregivers to consistently maintain boundaries and rules. Always being coached or shown exactly what to do and what is expected to be successful. When they are unable to do what is expected, always being supported into a peaceful and participative response. In the short term, caregivers must “live the individual’s life for them, with them”.
Once the initial dependence on structure and routines is established, over the long term, the task is then to attempt to generalize the number of situations where this control can be successfully maintained. When “setting up” a person for success, initially, they may have little sense of “self” as separate from “other.” They may have no sense of “object permanence”. Temporary aloneness is often experienced as:
“perpetual isolation. As a result the individual may become severely depressed over the real or perceived abandonment by significant others and then enraged at the world (or whoever is handy) for depriving her of this basic fulfilment.” (Kreisman & Strauss, p. 39).
Note: The individual who has been taught exactly how to be may be very demanding that everyone else also follow the same, explicit rules. Besides the maladaptive behavioral patterns that they display, their extreme anxiety states can lead many of these individuals to develop significant mental health issues. They may obsess on rules and require that all follow these. Failure to do so may lead to states of extreme arousal.
Maintaining adequate external control is essential. The individual is responding in-the-immediate-moment to cues from their environment. As with a very young child, in their early years, they are not responding to an “internalization” of the rules and expectations. In their early years, a very young child is not expected to “have learned his lesson”. In early years, a very young child is not expected to be “independently” able to follow the rules in the community that are so well rehearsed within the dependent setting of their homes.
The goal is to attempt to ritualize the individual’s response to positive verbal cues and expectations, and to apply these rules equally across environments. In this way, positive coping habits are established. For an individual who is dependent on their predictable, external supports, it is necessary to keep them feeling safe. Until this is developed the individual who is otherwise extremely maladjusted should be kept protected from unpredictable changes in routines, which he/she consistently finds to be overwhelming.
Within this context of “error free” practice, take the initial level of dependent control that has been established and gradually transfer this to other caregivers. Maintain a manageable level of external stimulation. Protect the individual from becoming over-aroused, which triggers post-traumatic-stress like reactions and behavioral regression.
Behavioral training goals are to train in the maladapted person the same skills that are used by well-adjusted, mentally healthy persons who are able to form reciprocal (validated) emotional attachments. It is necessary for the caregiver to imagine what the individual would be like with others if they did have the ability to form attachments.
Model the interactions that show the person how to be with others. Initially this may be displayed in a very artificial manner, but at least they will know that they are “doing the right thing” and following the successful “social rules.” The goal is to cause the individual to feel “connected” and validated by causing the individual to do “connected” and validated actions with others.
During training, one goal is to coach a person to “create” places of calm feelings. Physical methods of blowing out the breath may help (inhaling afterwards comes naturally). Cognitive methods of self-distraction and being coached to have “antidote” thoughts and feelings may help. Coaching active memories of strength, power, and accomplishment may help. Engaging in familiar habits may help.
Initially, these “successfully dependent” relationships may be artificial, prompted relationships. The responsibility is with the caregiver for coaching the individual to “act attached” and to act “as though” they care about others. Trough coached practice; the individual will act enough attachment behaviors that these may eventually become successful habits. They will eventually be able to memorize the feeling of being connected and be able to regulate what they have to do to obtain this feeling of being connected. They will be able to respond to these familiar props in familiar roles and to use these familiar habits. It is within the context of this type of “mental health sanctuary” that the individual will be able to mature, and eventually develop trusting relationships with others.
Nathan E. Ory, M.A.
Nathan Ory is a psychologist with the Island Mental Health Support Team, Victoria, B.C.