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.
So, once again, I read about you and PJ and it feels like my story with Chad. The four of us have been in this struggle for pretty much the exact same years. Some of them very hard ones. No one understood. I didn’t understand either, for that matter. Our pediatrician didn’t know much about autism but he became a friend and encouraged me when no one else did or I might not have survived. Your post today reminded me that I must have gone to him a dozen times, just worn out from all of it, and said either give Chad something or give me something, and he’d write a prescription for Chad. But then, he’d talk to me and I’d gain perspective and a little strength and most often never even filled the prescription. I wish I’d known you when our sons were younger. I would have been a better mother if I had even had one person like you who could have talked to me about how it felt to try to care for a child and feel as if I failed at every turn. If only someone who lived it too could have said this is not your fault and it will be OK, we can survive this and triumph someday. Quite a few other mothers and plenty of family either explicitly or implicitly criticized and judged me for not being able to make my child be a ‘normal’ child. If they’d known how much more harshly even that I judged myself, maybe that would have satisfied their need to hurt me. Who would I have been if things had been different, without the relentless isolation? I may as well been lost in a wilderness without survival skills. Dear God, if I felt like that, what was my poor child feeling? I am shattered still to think that I never knew what he needed or what his fears were. Each of us was alone and there was no relief from what autism did to us. Do other mothers think like this? Do fathers feel the same? I don’t even know much what my own husband feels about our life with Chad’s autism. I wonder if all women who’ve mothered children with autism for nearly 37 years suffer the anxiety and depression that I have now?
I admit, dear Claudreen, that I am actually envious to learn that you take medication for your nerves and that you accept that is all right, and that your doctor agrees that it is correct for you to have medication that you need and does not treat you like a potential addict. My doctor is kind but he does not have a clue what this anxiety feels like. He prescribed me ten ‘nerve’ pills once a few years ago, after I simply pitched a fit in his exam room. I didn’t raise my voice but told him he had no idea what my world was like, that every move I made my 30-something year-old, six-two, 200 pound son yelled like a bull and that I could not change position in a chair or even go to the bathroom without being screamed at every single time all day and all night every lousy day of my lousy life and I needed something that would allow me to relax, if only for a little while. I think he gave me the prescription to get me out of his office and he would not give me more than 10 pills because he was afraid I would be addicted. I’ve never asked again.
The psychiatrist I saw a couple of years ago would only give me anti-anxiety/anti-depressants that he said I would need to take for the rest of my life. We tried different ones and they all made me feel even more exhausted physically than I had before. I wouldn’t continue taking them and he won’t prescribe the nerve pills for long-term, though they worked and I would never have abused them. So, even though Chad is doing very much better, here I am, still living with chronic anxiety and even panic attacks, coping without any medication. And, feeling as if I’m wrong to need it. I love Chad more than my life and would not want to replace him with anyone else’s child, but this life we lead is not a normal one. My cardiologist recently said that he thinks I have PTSD (post traumatic stress disorder) from witnessing two traumatic and horrific deaths in a short period of time and from years of this kind of pressure. I think he’s right except that there is no ‘post’ to the stress; it is never-ending. He said long-term PTSD can cause damage to the heart. I wanted to add, “Not to mention the spirit and soul.” He did care enough to encourage me to go back to the psychiatrist and request evaluation for PTSD and for medication to relieve anxiety. I haven’t gone because I don’t want to hear the same thing about medication that I heard before.
I apologize that writing to you is my therapy for today. I’ll be better tomorrow. Most of the time lately I am more optimistic, because of Chad’s progress. I just wish I could be without the pressure and anxiety that won’t go away. I know that you hear from other women who’ve done this for years and years – how they have managed? Is this anxiety the norm? I hope most women don’t feel like this but I know many others surely do.
Love to you, Claudreen. I hope you and your family are well. You and PJ are always in my prayers.