04/17/98

Autism: A Parent's Perspective

Wendy, mother of Aubrey, a nine-year-old girl with autism, tells the remarkable story about her daughter's initial diagnosis, special schooling and transition to a regular second grade. It's a story about determination, creative interventions and refusal to accept pessimistic predictions about Aubrey's potential.

Dear Elizabeth,

Aubrey was diagnosed at 2 1/2 years of age with autism. We were told that she had the communication skills of an unborn baby, as well as the behavioral skills of a one-month old. Social skills were completely non-existent. Specialists said she would never speak, and would end up in an institution, probably by the age of 8. The psychiatrist who diagnosed her said that I was completely unrealistic to think she would ever go to college, and that any thought otherwise meant that I needed psychiatric help myself.

I didn't believe her.

Special Education and Speech Therapy followed. We also tried a few different vitamins. But the key to Aubrey's success is Aubrey ...and the fact that we believed that the therapy for an autistic child needed to continue when the child got home from school. That meant that everything our family has done for the past 7 years has been geared to making Aubrey fully functional. Change the child to fit into the world, not the world to understand the child.

Don't misunderstand me. The world must be more accepting, but I personally needed to know that if I die, she would survive and flourish. Also, the thought that she could be a victim as a result of her handicap made me sick. I will not allow it, hence our determination.

I have developed a lot of techniques for working with these kids, and have thought a lot about how to approach situations, and how to accomplish goals with them. Perhaps other people can learn from our experiences and adapt some of the techniques we used to situations with their child.

Here's one example:

The Problem: We wanted to take Aubrey and her sister to see Aladdin in the movie theater. But Aubrey hadn't gone to a movie theater since she was about a year old because it had been a less than wonderful experience. We thought the time had come to try again, knowing she now had more skills to handle it. The problem was that Aubrey would not watch things she had never seen before. This was a new movie in a new place -- two unknowns. Knowing the anxiety autistic children often have when dealing with new places and new things, we needed to think of ways to make the change easier for her, to make this a pleasant experience for all of us. We wanted to give her some flexibility.

The Solution: We spoke with Aubrey's teacher and speech pathologist to brainstorm some strategies. First, we went out and bought the soundtrack to the movie, and played it in the car, in the house, everywhere. Aubrey is fond of music, and especially loves Disney music, so we felt that she would like the parts of the movie that involved these songs. Next, we bought books and toys from the movie to familiarize her with the characters and scenery. We even went to Burger King to get the Jasmine figurine. Finally, we planned the trip carefully. We made sure she was hungry enough for popcorn, and tired enough to sit, but not too tired. We brought her current favorite toys and bought popcorn, soda, and M & M's. Then we took her to the movie ... 18 times. The first time she only paid attention when the music played, but the next time she paid attention to what went on between the melodies. The 18 times were in the morning, after lunch and in the evening, on weekdays and weekends. We had popcorn sometimes and candy other times. We sat on the right side of the theater, the left side, the middle, the back, and the front. We went to different theaters in a 40-mile radius. We went when it was crowded and when it was empty.

All of this helped her accept different situations we encountered, because we can't buy out the theater to suit her. She needs to be able to deal with whatever she comes up against.

Wendy believes that it is important for parents to realize that the schools can't do all the work; that parents are ultimately responsible for their children; and therefore parents should do all they can to make their child a success.

If readers want to know more, please write to Wendy

Please send questions or comments to bbruno@snet.net.