Autism Awareness Month  EP LOOKS BACK: APRIL 2006

FINDING THE BEST PATH: A Parent's Journey to Discovering the Intervention Plan for a Child with Autism

By Lauriann King

My father loves mountains. When I was a child my dad would take us hiking, backpacking and rock climbing. I was jealous of my friends who would go on vacation to Disneyland. Mountain climbing always seemed like a journey that would never end. I would work hard to make it up one hill and there was always another one that looked bigger than the one I just climbed; I would want to give up. My parents would encourage me to keep going. Sometimes, we would come to a treacherous part and I would look at my father and ask myself, "Does he seriously think we can make it up this boulder? I am risking everything here."

When I made it to the top of the mountain, I would have this deep, intense feeling of accomplishment. I would look at the simple beauty that surrounded the peak. Off in the distance, I could see another mountain. Eventually the challenge, risks and exhaustion became a passion. I was addicted. My perspective changed and I grew and became a better person. Ironically, it has been a similar adventure to be a parent of a child with autism.

I'm currently in the position of meeting parents whose child just received the diagnosis of autism and they are just looking at the picture of the mountain. How can you help someone on the beginning of the journey? What do you tell someone who only sees the high peaks and has never worn hiking boots? The worst part is that there is no clear path. The "mountain" can be really overwhelming if you don't have a path. a map, or even a compass. My son with autism. Sean, is seven years old now, and when he was younger I wanted directions. I kept asking the specialists to "show me the way."

My son was diagnosed with autism when he was two years old. When the evalua tion team gave him the diagnosis. I experienced many emotions. As I speak with other parents. I realize the similarity in our reactions. I find that parents tend to experience the following (not necessarily in this order):

• GRIEF - The loss of a typically developing child and a change in expectations for their child and family's future. autism.

• GUILT - The concern that they did something to create the autism. "Did I let him watch television too much?" "If I loved him just a little more. would he have autism?"

• APPREHENSION - Most of the time. parents don't know what "autism" means. Parents can feel intimidated and unsure about how they interact with their own child.

• RELIEF - A lot of parents know that something is wrong. and they are worried that it is their parenting. Sometimes. a diagnosis can explain the child's differences.

• OVERWHELMED - The "mountain" seems too high when thinking about other children in the family, spouses and personal dreams or goals. I remember thinking to myself. "What about my life?"

At a minimum. I needed a compass. First. I went to several seminars and read books so I could understand more about autism. I learned that autism is a neurological disorder and not the result of too much television or bad parenting. Also, I learned that autism describes only a piece of my son, Sean. He is first and foremost Sean and I am the expert on him. Most importantly, I learned that I needed an intervention plan or some essence of a trail map for my son to be all that he can be. If anyone has ever dared to surf the Internet and type in the words "autism interventions," they will soon be overwhelmed with possibilities including speech therapy. occupational therapy, biomedical interventions, supplements, diets, chelation, pharmaceutical interventions, applied behavioral analysis, pivotal response training, picture exchange program. FloorTime. and the list goes on...

What kind of a map is that? What is a parent supposed to think? I remember asking myself the following questions: How am I going to have the money to afford all of this help for my child? Where can I find funding for any of this? How am I going to have the time to do all of this? What will help my child the most? Will my child improve if I do not do all of this? Am I a bad parent if I cannot handle enough of this? Based on research. what is the most effective intervention for a child with autism? How do I do all of this for Sean and still attend to my daughter? To add to the confusion, most (not all) of the methods have little or no evidence behind them.

When I decided to talk to other parents, I found the same inconsistencies. One mother might proclaim that a diet "cured" her child with autism while another family reported no differences with the same diet. I took my concerns to other professionals including physicians. One therapist said that sensory integration must be included in my son's program. while another therapist said that they don't have enough proof of the effectiveness of sensory integration. The most amazing phenomenon was that whatever strategy families or professionals had chosen as their favorite, they did so with almost a religious fervor. Sometimes, a person would make me believe that if I did not choose what they had suggested, my child was doomed. For me as a parent. this brought a cycle of guilt again and again. What if I didn't try that diet just right? What if I wasn't following that strategy correctly? I concluded that there are no conclusions. I was looking for answers where none have been clearly determined. There is no trail for this high mountain ahead. I figured out the answer for myself... I had to walk the dirt path and make my own trail. When I meet with a parent whose child has just been given a diagnosis, I look into their eyes and see a familiar desperation. I remember the panic, the feeling like you are fighting against time for the life of a child that you love. I remember the feeling of wanting the answers right away. I wish that I could help the travelers to understand what I now know. I have come up with the following tips from one traveler to another:

• Understand that the beginning of the journey is always the most challenging time. When climbing your first mountain, remember that it is the most difficult. It is easier to walk with knowledge, and when there is a lack of knowledge it is replaced by fear.

• Consider the risk. Can this approach physically hurt my child? If the answer is "yes," don't consider it. I think of myself as a risk taker. but not with my child's health.

• Consider the cost. Can our family afford this approach? Will insurance or the school system pay for some of the costs? How will these costs impact the other financial needs of our family? As a family, we had limitations to the amount of money that we had available for interventions that were not being funded by outside sources.

• If an approach is effective, use it. If something is obviously successful in helping my son, my family would place more of our time and money in the approach.

• ls it the right choice for your entire family? We have learned to consider the needs of everyone in my family, including my "typically developing" daughter. Sometimes, this added limitations to the amount of time we were able to dedicate to our son's intervention plan. As a result, his intervention plan was not always perfect. We have accepted that there is nothing in life that is perfect.

• Be creative and make it your own, especially if you have a young child with autism. Research from the National Academy of Sciences (2003) recommends intensive intervention. Adequate funding is usually not available. so you will need to be creative. Include as many interested people as possible in trainings on autism. therapy sessions or books. The more people with knowledge that are involved. the better for the family.

• Make one addition to your program at a time. In order to evaluate the effectiveness of each new part of your child's program, you need to slowly add to the program - one new thing at a time.

• Create a definite beginning and end date to review the effectiveness of any new intervention program. Mark your calendar for the beginning and ending date of a trial addition to your program. By doing this, the effectiveness of the program addition will become more clear.

• Once you have chosen your intervention program. don't waste too much time fretting if you made the "right" choices. You cannot feel guilty about your choices. Your choices will be unique to your child and your family. No looking back!

• Enjoy your child. your family and your life. There has to be a point in time where you can stop thinking about programming and just enjoy.

Clearly these are not concrete directions, but rather tips for helping others find their own path. Unfortunately, I cannot give an exact map or carve out your personal dirt road to the top. I can merely help put on hiking boots and give words of encouragement to throw in your backpack.

My family went hiking up the Sandia Mountains near where we live in New Mexico. The beauty that you see from the top of the mountain is unbelievable. I look down and enjoy the panorama from every part of my being. I know that we made it up here together. l know that our trip was unlike any other. I am exhausted but feel strong and proud. Most importantly, l look at the magnificent vista and know that not many are as fortunate to ever experience this genuine splendor. I can still see other mountains in the distance for us but I am not afraid. •