One of the hardest things about parenting an autistic child is to keep high expectations as part of the behavioral standard while recognizing the reality and the limitations. Unfortunately there is no magic formula or secret recipe for this kind of balance. It is a process of constantly keeping the ideal in mind but also remaining aware of the reality of what it means to be autistic.
An autistic child has limitations. Many of them. Their world is not like ours and they simply cannot do the things other people can do. Life moves too quickly for them and often appears random without the required order. There are usually abundances of stimulation, noise, complexity, color, and confusions surrounding our lives and an autistic tends to shut down amidst the chaos. In addition, the lack of physical coordination contributes to a sluggish and awkward existence, making crossing streets, reaching for things, writing, and general mobility rather difficult. Usually not being able to drive and almost not able to navigate public transportation, they are reliant on help to accomplish any task not readily accessible. Computers are potentially liberating in many ways, but for an autistic a computer is simply another machine full of complex problems and over stimulation.
More limitations are caused by a lack of curiosity, little imagination, few dreams, and the inability to use creativity in solving problems. All these and more are debilitating realities of the life of an autistic. Ironically and comfortably at least to an extent, they do not always recognize their own limits, and instead learn how to cope and how to exist successfully within the small frame of ability.
But as I told Joel Tucker, our 20 year old autistic son, he may not use his disabilities as an excuse for mediocrity or poor behavior. To this end, we have invoked a series of high expectations and goals for our son and constantly encourage him to reach for these things. Some are rather trivial in some ways, involving hygiene, life skills, and coping techniques, while others are substantial and complicated. Each day we remind him of his goals and each day we present several high expectations to him. Obviously if the goals are unattainable, we risk disappointment, depression, and stress. On the other side, if the goals are too simple, then he has nothing for which to strive.
This all creates a healthy balance of respecting the reality of the situation without letting go of the ideal. It is called parenting a disabled child and we have done so for 20 years to some degree of both success and failure. We often ask ourselves, "What can he accomplish?" Or "What is the best thing for Joel?" These questions and more govern our actions as guardians and dictate our goals for him. Without being imperialistic, however, we also encourage Joel to set his own goals and reach for the highest in all things. This is particularly important as the adult years set in.
Joel's own goals are usually immediate and involve some sort of gratification of the senses. His lack of a concept of time prevents him from forecasting or projecting the future. This means that we encourage him to develop his short term goals, but we guide him toward the longer term, always remaining committed to the balance of high expectations and recognition of reality.
As I write this little piece, I am reminded that though the limitations are different and though the dreams may be framed by his autism, the process for helping Joel is not dissimilar to helping anyone including ourselves. We should dream big and relentlessly pursue the ideal, but also be shaped by our current reality. It all makes for a wonderfully complex culture and one that is guaranteed to keep us hopping!
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