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A Universal System of Care

 

Autism is one of the most complex issues we face in society today. Autism is not just one thing. As a child once said to me, “Autism is big.” He was right, autism really is big. It is complex and it is pervasive. It can be difficult to understand and it can be hard to know what to do, when to do it, and how to help.

One thing alone will not help this child. It often takes many things, many people, and many ideas to improve this child or adult’s life. My sole goal in life is to improve the quality of my son’s life—in all things and in all places and in all ways. Every single day I ask the question, “Have I made his life better?” And every single day, I push to make the world more accessible, to help the world understand him better, and to give him the tools he needs to be whatever it is he wants to be and do in life. Every single day, I look at my son's life and think, “How can I challenge the way the world views autism?”

One of the ways we change the way we view autism is to provide comprehensive care to the person with autism. Too often, we think of autism as merely a speech and language issue. Or a behavioral issue. Or a sensory issue. And we fail to see just how ‘big’ autism really is. Autism is not just a language barrier. It is not just a behavioral program waiting to happen. It is not just about a steady sensory diet of balls, trampolines, and swings. It is all parts of your life and in all things you do.

If we truly expect to improve the quality of this person’s life, we must move beyond our concept of care of providing only therapy.

We need to think better medical care. Everything can’t be autism related. Statistically speaking, this person is going to have OTHER problems in life. Headaches, dental problems, food allergies, diabetes, toe jam, and hang nails are going to happen to the person with autism. And if we fail to treat these issues and assume that it’s ‘just autism’ we have failed this person. We need to treat the whole person all of the time. And indeed this can be a Herculean effort when the child or adult doesn’t communicate pain or distress in a typical manner. It takes a level of observation that goes above and beyond, ‘How are you today?” If we continually assume that everything is autism or that nothing can be done to help, we do a great disservice to the person with autism.

We need to think comprehensive approaches that consider the person with autism is dealing with more anxiety and stress than anyone else on the planet (minus maybe those in a war torn and ravaged country). These are individuals that can spend the majority of their day, every single day, in a state of fight or flight. Stress can take its toll on your life and your health in ways that most people find unimaginable until they’ve lived it. When you experience that moment of fight or flight, the body is prepared for dramatic and explosive action. And in that moment, you really don’t feel like having a sandwich. Most of our children and adults with autism are dealing with altered states of hunger, sleep, alertness, and concentration because the body and mind are constantly pushed to the edge. All of which brings us back to providing better medical care for this child and for this adult. We must care for the whole individual—all the time. We must also care for the autistic person’s support system. If caregivers, friends, and family members are also pushed to the edge, we must work to bring them back. If we continually put out fires without thinking of the bigger picture we do a great disservice to the person with autism.

We need to think life skills. Yes, the four letter word and the 400 pound elephant in the room. LIFE skills are needed to function in a world that requires us to constantly work on Maslow’s hierarchy of needs. Our physiological states of being and our sense of safety provide the foundation to our lives and if we lack these basic, fundamental human needs our lives crumble around us. One can be at the top of the class and graduate from an Ivy League college and still need to learn life skills. It doesn’t matter where you fall on the spectrum, those fundamental human needs will always be required to have an improved quality of life. We need to think the entire spectrum of the life cycle. Too often we think of only the autistic child, without giving thought to what this person will need as this child becomes an adult. The three year old becomes the 18 year old, becomes the 34 year old, becomes the 42 year old, and becomes the 63 year old. If we continually ignore these needs, we do a great disservice to the person with autism.

We need to think about the words and phrases we use when discussing autism or the person with autism. If we continue to frame this person’s life in a negative connotation, we fail this person miserably. It is IMPOSSIBLE to develop positive self-esteem when others continue to say what you cannot do. It is IMPOSSIBLE to believe in yourself when no one else does. It is IMPOSSIBLE to dream about a future when everyone tells you that you have none. It is IMPOSSIBLE to find faith in yourself when all the world has given you up as a lost cause. It is IMPOSSIBLE to have confidence and self-respect when all the world says you are a shell of a human being. If we continue to frame the context of autism as a plague on mankind, we do a great disservice to the person with autism.

We need to think beyond social scripting, prompting, and generic attempts at socialization. Our children and adults need a sense of belonging. Belonging to something greater than themselves, greater than just their classroom, greater than just their family. People with autism need a sense of being a part of the community rather than continually pushed to the fringes. We need to realize that leaving the person with autism on the fringes of the world creates a very lonely place to live. We need to realize that depression is real and it is serious. Far too many children and adults with autism commit suicide every year because they have been abandoned to the ends of the world rather than being embraced by the center of humanity. If we continue to push away the person with autism, we do a great disservice to this child and to this adult.

Autism advocacy cannot only happen in April. Our level of awareness and understanding cannot be left to 30 days in April. It’s not just about explaining what autism is and how to recognize it. It is about removing prejudices and barriers. Autism is not just a clinical definition in the DSM-IV. Autism is someone’s life and it’s time to understand how to be a part of that life rather than an outsider looking in. Our children and adults with autism are not petri dishes and experiments that we can voyeuristically examine from the outside. Nothing about them, without them. It’s not what WE think we should be doing to improve the autistic person’s life—it’s about what the person with autism believes we should be doing. If we fail to listen to the person with autism, we do a great disservice to this child and to this adult.

It is time to move beyond speech therapy. It is time to move beyond behavioral programs. It is time to move beyond sensory integration. It is time to move beyond educational methods. It’s time to create a new world for the autistic individual. Think about what you can do right now to create a new world and a better life. A world where the quality of life is continually pushed forward. A world where the person with autism is embraced. A world of respect and understanding 365 days a year, every single year. A world of possibility.
 

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In Illinois, be sure to check out the Illinois Assistive Technology Project based out of Springfield.192.168.1.1