In the 36 years since I have been a part of the autism conversations, I have read and heard much about autism. Some information that helped and some that didn’t. Information about gluten free diets, infusions and medications. There has been conflict and controversy at times because parents, families and professionals don’t always agree on treatments, services and information.
When I first ventured out of my house to try to answer some of my questions about autism, I found much disagreement among parents. I was on the state board of directors and asked Bill Walsh, who was our executive director why there was not a Wayne County Chapter of the Autism Society of Michigan. Detroit is in Wayne County and it is the largest city in Michigan. He told me that I should re-activate the chapter that was no longer meeting.
As I re-activated the chapter, I found out why it had been discontinued. Parents were angry with each other about previous disagreements. Meetings were filled with debates and arguments and it was hard for everyone to get along with each other. I feel that we get so much grief from our children that we should be kind and supportive of each other. I was even blamed for some of the state board decisions that parents disagreed with.
Back then, (the 1970s) the autism conversation was that autism was caused by cold, refrigerator parents. I knew that that did not describe me, but I still felt guilty for being a part of causing my son’s condition. I hope that they are not still putting parents on that guilt trip. Parents were seen as incompetent and I felt that way many times. We worked to get parents to be seen as part of the child’s treatment team.
In the 1980s, the conversation was about Auditory Integration Training (IAT) and Facilitated Communication (FC). IAT consisted of treating the person with autism with a series of sounds and sound waves that was supposed to help improve their behavior and clarify their thoughts. When I was investigating this treatment for PJ, I found that it was only being done in Toronto, Canada. We would have to be there for at least six weeks while they individualized a program based on PJ’s abilities and behavior. I decided against it, but I would love to hear if it worked for anyone.
In FC, a person, referred to as a facilitator supported the arm of the person with autism as the autistic person typed his or her thoughts. There was much debate about whether the facilitator was influencing what the person with autism was typing. There were disagreements and lawsuits about the typed material and the practice was supposedly discontinued, but there was a recent lawsuit in Michigan where FC was being used with a girl with autism.
In the 70s and 80s, many agencies that helped children with disabilities did not accept children with autism. The autism conversation became trying to get these agencies to accept our people. Our children had a reputation for being hostile, disruptive and aggressive and since that described PJ, I did not try to influence the agencies, but I did try to help increase autism awareness. I could not have predicted how the increase in the diagnosis would help increase services to our children.
The debate about medication was another conversation. In the institutions, many were over medicated and I was afraid of what effects the medication would have on PJ. However, after three nights of neither of us getting any sleep and PJ screaming all night, I told his doctor, “You’ve got to medicate him or me, preferably both of us.” His doctor understood and gave me prescriptions for both of us. I have often taken medication for my nerves during my journey with PJ. Since I am so old now, I take the medicine on a regular basis. Medicine was created for a purpose. It is people who have abused that purpose.
I decided to write and to blog because I wanted to express my thoughts and be a part of the autism conversation. I am glad that people with autism are now a part of the autism conversation. That is evidence of how far we have come. I appreciate what they have to say. We don’t have to always agree. We can disagree without being disagreeable. I love what Pastor Rick Warren says; “We don’t have to see eye to eye to walk side by side”.
Until next time; May you have Peace, Love and Prosperity in your life.