Someone asked me recently what it’s like to do my job and work with families touched by autism.

After trying to find a quick one-sentence explanation on what it’s like, I said, “Working with families that have been touched with autism is the most frustrating, rewarding job I’ve ever had.”

All the books and studies and experts give only their thoughts about what autism is and how it should be treated. Until a person works in the trenches and has firsthand experience, they don’t see the plethora of behaviors, deficits and gifts that are the spectrum.

When people find out what I do for work, their responses — if they don’t work in the field themselves — tend to fall into three categories:

• They have a friend who has a child with autism, with certain symptoms.

• They have no idea what autism is.

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• That must be so hard.

Many people in the first category think that autism means one certain and finite set of behaviors. If this were the case, my job would be both simple and boring as each treatment plan I develop would be the same except for the name of the individual being treated.

The key word here is individual. The statement that has found its way onto bumper stickers buttons and T-shirts says, “If you have met one person with autism, you have met one person with autism.” Every person with autism is first and foremost an individual, which means they present with their own behaviors, needs and gifts.

My job is to recognize those and develop a plan on how to use what the person has to assist them in being more independent in their daily lives, while teaching those who interact with the individual the best way to do that.

Just as it is unfair and wrong to say every person in a minority or every religious person is or acts a certain way, it is unfair and wrong to say everyone with autism is or acts a certain way.

People in the third category focus only on the challenging aspect of living with a person with autism while offering what can be taken as insincere sympathy. When people say, “That must be so hard,” families hear, “Thank goodness, my child doesn’t act like that.” It hurts when people focus on the challenges rather than finding a way to help.

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My job is to try to find solutions. Some are easy, and anyone can do it, such as holding a shopping cart while a parent deals with a child’s disruptive behavior. When shopping, most parents would love it if another person asked if they can help when their child is having a behavioral/emotional meltdown. It might simply involve grabbing an item off the shelves to put in their shopping cart.

The people I really enjoy talking with are those who admit they don’t know anything about autism. We don’t have to spend countless hours correcting misinformation they have accumulated from countless Internet websites. These people usually are open to learning how to best teach a person with autism.

I fully believe individuals with autism do not have a learning disability; we have a teaching disability. Most of us know only one way to teach something. For example, if I were to ask someone to close their eyes and explain how to tie a pair of shoes, most would find it’s not easy to do. Now I ask them to imagine the same thing, only the person being taught doesn’t speak the same language as the teacher.

My job is to figure out different ways to teach everyday skills for every individual I work with. Sometimes, I have to change the teaching method every time it is presented. My job is to watch a child have a tantrum and try to determine what was the trigger when the child cannot tell me. My job is to design a functional communication that the child and others can use and understand. My job is to build on the smallest success.

My job is to teach parents how to communicate with their child, understand their triggers and shape the family into a happy healthy unit. My job is to put out the fires that occur when families are frustrated, tired or desperate.

My job is to complete a jigsaw puzzle without seeing the finished picture, while the pieces change shape and size, and are not all on the table at the same time.

My job is challenging in the extreme and rewarding in the extreme, and I cannot think of a better occupation.

Michael Bouford, of Smithfield, is a field supervisor for in-home services for a central Maine-based section 28 company, which provides rehabilitative and community services for children or youth up to the age of 21 who have a developmental disability that affects their everyday functioning.


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