More Questions Than Answers

Since “Inspired By Autism” came out, I have been trying to get answers to questions about autism. I know that there are not a lot of answers, but I have been trying to find out about treatments that have actually worked for people with autism. I haven’t had much luck.

In the 1980s, when PJ was younger,  AIT (Auditory Integration Training) and FC (Facilitated Communication) were being promoted as effective treatments for people with autism.  In Auditory Integration Training, the person with autism was fitted with headphones that produced sounds that were supposed to help untangle brain waves. Of course, this was not being done everywhere and PJ and I would have to travel to Toronto, Canada for the treatment. We would have to be there for at least a month while they individualized the sounds for PJ. The treatment was expensive and I wasn’t sure it would be worth the hassle and expense. I would like to know if it worked and if it is still being used.

In FC, an aide, known as a facilitator would support the arm of the person with autism as the autistic person typed his or her thoughts. The facilitator was only supposed to support the arm of the autistic person, but some of the messages typed were questioned as to whether the facilitator was just supporting the arm or guiding the arm. In the beginning, I thought it was effective, but there were many questions concerning  this treatment. Was the person with autism actually typing his or her own thoughts or were they the facilitator’s thoughts?  The typed  messages sometimes got the parents or teachers in legal trouble.

As recently as last year, a case was settled in a dispute about FC.  Because of the typed  messages, a girl with autism and her brother were removed from the home and the parents had to go through extensive and expensive legal actions to try to prove that the typed messages didn’t come from their daughter, but from the facilitator. They finally got their children back, but it was a harrowing ordeal. We had many harrowing ordeals concerning our children thirty years ago and I am sad that it is still going on.

I did find out that FC was discredited and I thought it was not being used anymore until I heard of this  recent case.  I would like to know if it was ever accurate or effective. I tried it with PJ, though I was not a trained facilitator. He would type words that I put on flash cards, but I was never able to get him to type his own thoughts.

The Option Institute  therapy was something else that I wanted to try. PJ and I would have had to travel to Massachusetts to take the training which was also very expensive. Parents of a son with autism taught the methods that they had used to train their son to help him recover from autism. They were the first success story that I heard of and I really wanted to try this for PJ.  I finally decided against it, but I would love to know if this treatment was successful for other people with autism. I have heard of cases where it was not successful because to fully implement the treatment once you returned home was  stressful, expensive and exhaustive.

In the 1980s, the statistics were that 50% of marriages failed when the family was raising a child with autism. I would like to know if that still holds true. My own marriage came to an end, but because PJ senior was a great help and support during the many years that we were separated, we eventually got back together. PJ was our common ground and we always worked together to make sure his needs were met. I have mentioned before that PJ senior was a member of the Spinners singing group. He traveled extensively, but always tried to make sure that PJ and I were well taken care of. He was so kind to us during our separation that we eventually got back together, which proves that God is still working Miracles in the world.

To parents of children with autism, I want to remind you of one of my favorite scriptures, Galatians 6:9, ” And let us not be weary in well doing: for in due season, we shall reap, if we faint not”.

Claudreen Jackson

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