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Basics of Care

 

When it comes to autism everyone has an opinion. Everyone has a cure, a treatment, a methodology, or a belief system. When it comes to autism someone always thinks he or she is right. When it comes to autism someone always thinks they know what the autistic person is thinking or feeling. When it comes to autism someone always knows best.

The reality is that autism is multi-faceted and dynamic. The reality is that autism truly is a spectrum. Jack and Jill are very rarely similar. The reality is that we guess as often as we know. The reality is often based on a series of assumptions and ingrained beliefs, which are often painfully outdated. The reality is that autism isn't easy. Just when you think you've figured it all out, the world shifts and we all have to start from scratch. What worked on Monday, often doesn't work on Tuesday. Adaptation is crucial.

Autism requires you to give everything you have everyday. Autism throws you in the deep end and says sink or swim. Autism expects you to be ever bit as multi-faceted and dynamic as it is. Autism demands a level of intellectual curiousity and an ability to find the answers when none are obvious.

The reality is that we often find people working with or living with an autistic person who want the easy way out. They want the magic wand that with a flick of a wrist will have a child talking, eating, and socializing as any other chid might. I know I wanted the magic wand and sought to find quick and easy solutions to my son's eating problems. I know I wanted him to speak and I wanted him to speak NOW. Yet autism works at its own pace and in its own time. All children develop differently, and this holds especially true for the autistic.

A common misconception about autism is that there is no hope and that there is no progress. Those with autism absolutely continue to develop and grow and mature, but these children do it to the beat of their own internal drummer that sets a pace apart from our own. We have but to stop and listen in order to hear it.

Too often, those who live with and work with autistics talk too much. They talk to cover the silence, they talk to encourage cognitive abilities, they talk in order to model verbal speech. Yet in working or living with the autistic, one must listen more than they speak. One must observe more than they do. Of all the tools one can have in understanding an autistic individual, the greatest are your own two eyes. Most tend to downplay the importance of observation, mostly because they are doing it wrong. To do it right, one must throw every sense and thought into the other person. I cannot tell you how many times I've gone to observe someone only to be bombarded with thoughts and questions by the adults in the room. Observation is difficult and it takes a lot of practice to get it right. Observation is about perspective and finding yourself and your thoughts in someone else's shoes. What is he seeing? What is she smelling? What is he hearing? What is she feeling and experiencing that I'm not? Observation is the ultimate test of the knowledge you have accumulated over the years and in a variety of disciplines.

The fact of the matter is that no one person always has all the answers and there is no magic wand with an easy way out. No one person can know everything there is to know about autism itself, or the person who has it. If you hope to work with or be with an autistic individual, expect to interact with a variety of different people in a wide assortment of disciplines. Autism is pervasive. Autism colors every thought, experience, and interaction. Just when you think you've figured autism out, the whole picture changes. We can either change and adapt with that picture or we can be left behind.

One pet peeve Miss Lisha has are the 'My Way or The Highway' individuals who work with or live with autistics. The 'My Way or The Highway' crowd tend to be as neurologically inflexible as the people they work or live with. They may even have their own autistic traits. The autistic is often neurologically incapable of the change we are asking of and yet the neurotypicals tend to keep push, push, pushing for the tide to turn in their favor. When we ask for change, we must also be prepared to make our own. These unyielding types seem to be on a mission to break the spirit of the autistic person and that's the last thing anyone should want. Autistic individuals tend to see the world in a way we do not. And that is a very good thing. It's high time we started working WITH this rather than AGAINST it.

Success is not measured on how many times out of 100 a child put the puzzle piece in the right spot. Success is not measured in percentages. Success is not measured in numbers or on paper or in an IEP or in a doctor's office. Success is measured by the quality of life an individual has.

Quality of life is tricky. It cannot be graphed. It cannot be quantified. It cannot be charted. Published research is a bit more scant in this area. It's down right difficult to imagine the measures to determine the quality of someone else's life. Especially when this individual doesn't communicate the same way everyone else does and has sensory experiences that are radically different from the norm. How can we determine the quality of life for an individual who does not speak? How can we determine the quality of life for an individual who feels and experiences life in ways neurotypicals can scarcely begin to understand? Quality of life has very little uniformity to it. What makes my quality of life better will not be the same for you.

We must continue to push the envelope in the standard and basics of care for people with autism. We must expect more out of ourselves as we attempt to understand the world of the autistic. We must be willing to work as hard as the individual with autism does, and that's a pretty high standard. Good enough just isn't good enough anymore.