Living with an Autistic Child: One Mother's Perspective

We've all heard the term autism, and for each of us it brings differing thoughts to mind. For me, the mother of 9 children, I certainly had my own opinions for years. In the past, the information available was little and the interest was even less. We generally believed that autistic children don't like people, they sit in the corner and don't talk and the early signs are no eye contact. They were considered socially inept and that was just the way it was... Often, they were left for hours to themselves; the thinking was that they wanted it that way. Over the years I added the notion that they have "tics," meaning they make funny noises, do funny things with their hands and are not capable of interacting with anyone on any level.

My opinions didn't really matter; I never personally came into contact with anyone who suffered from this disorder. In my little world there was no need to really know what it is all about! That idea alone is dangerous! We really should all be informed and concerned enough about others to learn what we can, be sensitive to the needs of those around us, and do our part to help those struggling along.

Our ninth child was born as a miracle baby, being very premature and very small. Some of my other articles share the details of this. The first 3 years of his life were spent in what we call "survival mode." His lungs were diseased, his frame small and his immune system weak. After coming through these years and successfully having physical therapy to strengthen his muscles and allow him to walk and function, we began to notice other areas in this precious child's life that do not fall into the "normal" catagory.

While in our home among family members we noticed sudden out of control outbursts when the expected routine was not happening. We noticed a love for hiding in and under furniture, a refusal to speak when someone outside of the family was in the room. Others laughed these things off as a shyness, but I found them alarming and began doing my own research. After an episode in a restaurant, when a sudden scream from the high chair indicated that the room had gotten too full and the noise level too high, I grabbed him up out of the highchair, hugged him tightly and noticed his body relax and the screaming subside. Thus began the regular tight hugging when I could see the stress level increasing. There seemed to be a lack of understanding that Mom would return when I would leave him with Grandma. When picked up his anger would be so great that he would hit, bite, kick and scream at me for hours. Of course, spectators are often of the opinion that I am somehow allowing this behavior - even though no one ever witnessed any of my other 8 children having a normal temper tantrum! Trying to attend church became a constant wearying battle. On many occasions when the van doors opened and everyone piled out to enter the auditorium this child would lay on the floor under the seat of the van and refuse to come in. If I successfully fought to get him into the church building he would grab my face with both hands and beg me to "leave this place". Most often if we stayed he would retreat to under the church pew. Trying to take him into a class with others his age was always a traumatic experience! He would not speak, would not participate, would run if the teacher approached. Teachers became exasperated, children started asking questions and I felt like our presence was just too much for everyone else. Finally, after about a year and a half of going with my own diagnosis and a doctor's suggestions, we made the appointment with the specialist.

OK. So, we now have a clinical diagnosis. It is based on the doctors spending several hours with my child and on the information supplied by our pediatrician and ourselves. There is no doubt that this child is autistic. What a relief for parents to know for sure what we are dealing with. To be handed information that explains the "why" for some of the behaviors and also gives recommendations to help is nothing less than a blessing. The frustration? The people who continually discount the diagnosis, the people who understand very little about autism and the unique aspects found in different subjects and yet want to give their opinion. Usually and sadly this opinion is that my husband and I are not disciplining our son as we should. "Hit him!' has been said more than once to me. The glares in the midst of a very exhausting battle are no better! And then there are the comments, "He is so good when I have him. I just don't understand why he does that to you!" This kind of comment leads me to fear leaving him with someone who is unwilling to understand his unique needs and thus controls his behavior with scare tactics!

This week we had one day in the life of our son that I'd like to share. I will just give the bare facts. This is what happened. This is what I did. This is what my son did... Then I will share with you the comments that were so hurtful after a day like this! You be the judge. It is my desire to shed some light on what many parents are facing. We need to all be more aware, more informed, and more willing to give that parent of the out of control child the benefit of the doubt! While God has entrusted this child to me, I will love him, discipline him and train him so that he is able to function in this world and make a difference for eternity. The process is long and the changes are not overnight. Hitting an autistic child in the name of spanking will get you hit back! It may eventually cause him to cease his behavior, but it will not train him to control the rage, the fear and the very real anxiety that he is feeling.

So, on Tuesday of this week we had an appointment to visit the eye doctor. Christian, my son, has had eye issues from the NICU on. His first surgery on his eyes was while he was still in the NICU. He had glasses put on his face when he was a year old so that when he began crawling he wouldn't run into things. He has had the same doctor and the same technician throughout the entire 4 years. On this particular day, knowing how he generally reacts to waiting rooms, I spoke with him while driving. I reminded him of how nice the doctor is, how he has always taken good care of him, etc. He did not respond but rode quietly staring out of the van window. When we arrived and parked he refused to get out of the van. I talked to him some more, explaining that we had to do this in order to get his new glasses. I assured him I would stay with him and he would be fine. I then carried him into the building. When we opened the door to the waiting room his grip around my neck tightened and he buried his head into my shoulder. He stayed this way while we checked in and took our seats. My 12 year old daughter took the trip with us and sat down to read in the seat beside us. We stayed this way for several minutes. My back began to ache and I tried to turn Christian to readjust his position. It was at this point that he spotted the other 5 people in the waiting room. He began to fight me, banging his head on the wall behind my chair and kicking with all of his might. Yes, everyone was staring. I let go of him to see where he wanted to go. He slid down the length of my chair and crawled under our two chairs, lying on his back on the floor and sucking his fingers. I told Hannah that we would just leave him there and I just smiled politely to the staring individuals in the room. After about 10 minutes I heard a funny sound and saw my little guy come crawling out on all fours, moving as quickly as he could across the room. He went the length of the room, behind the glass displays and under the corner cabinet. I quietly went to the corner and got down in the floor where I could see him. He was shaking, with his knees under his chin and his eyes wide! It broke my heart. I told him that I would hold him if he would come out. He refused. So I sat there and we talked. After a few moments, the office aide came out and asked me if we were ok. She asked me if I had seen a particular doctor in the area that deals with autism. I assured her that I had. She told me that her son is also autistic, but he is not nearly "THAT BAD!" I just smiled and nodded. After a few more minutes we were talking about the glasses on display and Christian decided he wanted to show me a pair. I picked him up and carried him around looking at the different glasses. He seemed to have forgotten the other people. Then suddenly he grabbed my face and told me to leave that room! I told him we couldn't but that there was no one there that would hurt him. He then pointed my face in the direction of the strangers and assured me they would! He crawled back under the corner cabinet.

This time his sister Hannah went over and talked to him. The technician came out and called for Chris. He again got in the crouching position with his knees under his chin and started crying. I tried to get him out, reminding him that he knew his doctor and his doctor wanted to see him. He said that whoever called him was not his doctor because his doctor is a man! I forced him out of the corner and made him look at the technician, whom he knows. She spoke to him and he relaxed. In the examination room he was placed in a black chair. He normally is tested in a red chair. This unexpected change was very upsetting to him. He kept telling us this was the wrong place, etc. When the doc came in he would not cooperate at all. He wouldn't look at him, wouldn't answer his questions, etc. The doctor became frustrated and sent us into another waiting room! As soon as we entered a very small and very full waiting room Chris took off running. He ran through the entire office, screaming. He pushed a stool on wheels through the office! I couldn't catch him. When he darted out the office door and into the hallway he stopped. I caught him and dropped to the floor to hold him. His eyes were wild, he was banging his head, he was fighting with all of his strength. It took about 15 minutes for me to calm him down and talk reason to him. We walked back into an empty waiting room. He walked directly to his sister and started talking to her. The technician then came and told me that she had reminded the doctor of the autism. He decided he could handle this with a different approach. He came into the waiting room himself and asked Christian to go with him into his office for some candy. Chris very sweetly followed him down the hall and into his office. The doctor offered him a piece of candy. The technician came down the hall and interrupted saying that her candy was better. She handed Chris a piece of candy which he immediately threw down the hall. He was furious! I explained that he had been promised a piece of the doctor's candy. The doctor gave him his piece and all was well. We went back into the empty waiting room and waited. There were no patients left in the office - our exam went well and we were able to leave, after about 4 hours of this ordeal!

Christian was exhausted, I was bruised, scratched, bitten and also exhausted. We weren't home long before we headed off to the gym for other family members to attend ball practice. As I watched him run through the gym with his sisters I couldn't help but think how difficult the day had been for him. How exhausted he was, how frightening the small rooms filled with people are to him! It was the next morning after piano lessons that his teacher made the comment. "Joy, I'll tell ya. I just don't agree with that doctor's diagnosis! We had a great lesson! He looked at me and did what I told him to do!" I'm afraid I answered a little too loudly. "Next time I leave this house and take him into public, to a doctor's appointment, or into a crowded building, I am going to video it. I am then going to show it to all of you who want to constantly tell me that he is just stubborn!" "Don't tell me that he is perfect for you! Don't tell me that there is nothing wrong!" I know better. I live with the sudden changes. I live with the child who wanders through the night while everyone else sleeps, I live with the child who has very little knowledge of pain and therefore will burn himself and not know it. I live with the child who is terrified of crowded rooms, who runs through doctor's offices, locking himself in rooms. I live with the child who thinks refrigerators, closed bleachers, washing machines and entertainment cabinets are for little boys to crawl into. I live with the child who hides behind decorative trees, under clothes racks and under chairs in public buildings. I live with the child who finds his comfort in licking my clothing. I am in the process of raising a host of other children who don't display these types of behaviors! AND, as for piano teachers, Sunday School teachers, Grandparents, etc. We are making progress! We do have some really wonderful, seemingly normal days! Please recognize this as progress and not as negating the problem in the first place. For any parent or family who is walking this walk, it is long, it is hard, it is unpredictable and it is exhausting! Thoughtless comments and arrogant barbs do nothing but make our lives more difficult!