When Charlie was 15 months old, I called our pediatrician and asked about Charlie’s inability to speak. I was told to wait and bring him in for his 18-month check-up and they would see how he was doing then. Our pediatrician performed the CHAT1 test on Charlie and then advised us that we should look into the Early Intervention program for Charlie. We were still living in Erie at the time.
The doctor advised us that it could be a number of things, including the fact that he had so many siblings to talk for him, and not to get very upset. He told us that so many kids were being diagnosed as autistic that a person would have to be careful when going past our local center for autism diagnosis, The Gertrude Barber Center, if they walk too slowly and they would pull you in. It was said jokingly, but now I realize that it shows the misconceptions regarding autism in general. Even the doctors don’t know much about it. At this point I was thinking that autism was synonymous with mental retardation. And I knew my child was not mentally retarded, so therefore, how could he be autistic? Also, it didn't help that in our town The Gertrude Barber Center was known as the place where people who were mentally retarded lived and worked in sheltered workshops. Huge stigma right from the start.
He also mentioned that the Early Intervention services were free, which was a huge thing for us, I was staying home with the kids and my husband was finishing up his physics and teaching degrees and working full-time as a personal care attendant for a young man with spina bifida. Money was tight to say the least. Our income was under $15,000 at the time.
Two Early Intervention specialists evaluated Charlie. One of those ladies had two children who were autistic. Secretly, I felt that this made her suspect. She might be one of "those" people who see autism everywhere. She told me that the reason she was working in Early Intervention was because of her own children and her need to help other kids with autism. I was very nervous about this whole thing.
Both ladies felt right off the bat that he was probably autistic, but wanted to come back and do more testing. They came back in a week and did a Denver Developmental Test, which showed Charlie’s developmental age at about 2-6 months. We were floored. We knew that he could understand us. How could he test out so low? We could see intelligence and spark in him. We refused to believe that he was autistic.
He didn’t do any of the “autistic things” that we had heard were hallmarks of autism. We had both seen Rainman, so we felt we knew about autism. He didn’t spin – well he did twirl his socks - one in each hand and would keep them going for 20 minutes or more at a time, but he didn’t spin himself in circles. Also, by the time that he was given the test he had almost completely stopped this behavior. He didn’t rock back and forth, well he did bounce a lot on the bed, and the couch, and everything that he could bounce upon, but then so did Jon. He didn’t hand flap, but he did look out of the side of his eye a lot. He didn't bang his head on the floor or inflict harm upon himself. They pointed out more things that he did that we had never noticed, perimeter walking, lack of social eye contact, lack of play skills, major fascination with doors, but we were too deeply in denial at this time.
We have learned since then that it is very common for parents to be in denial. We have also learned that because autism has so many shades and facets that a child can fall anywhere on that spectrum and be completely individual enmeshed in his own autism.
We took Charlie to Pittsburgh Childrens' Hospital in May of 2002 – really for confirmation that the Early Intervention people were off their rockers. It was a long 5-hour drive and Jon and Charlie were so upset in the car. Charlie was screaming and Jon was asking how long the drive would be. Neither child liked long car drives at all. Jon used to cry so hard when we drove to visit his Grandparents that we stopped going shortly after he was born.
We stayed overnight in a hotel. Jon liked that; Charlie didn’t fall asleep until about 2 am. His routines were in tatters at that point. He spent the night bouncing from bed to bed in the room. We woke up exhausted and our nerves were frayed.
We had planned to visit Chuck’s parents on that two-day trip, having his appointment the following day, but instead we called the clinic first thing in the morning and asked if Charlie could be seen right away. We were thankful that they were able to see Charlie almost immediately. Chuck dropped me off at the clinic with Charlie and took Jon to see his grandparents.
We waited in a colorful room with a TV and lots of toys. Charlie was happy. But after waiting about an hour he was getting tired. He had played with the toys, walked every inch of the room and he wanted to leave. We were greeted by the doctor and taken into a small room. I mentioned to her not to close the door or Charlie would become upset. She turned around, closed the door and put her chair in front of it.
As soon as she closed the door Charlie just went ballistic. Charlie would have perhaps been more willing to stay in the room if the door was left open, but he was afraid of doctors and small rooms, and no amount of cajoling could convince him to play. You can't imagine how angry I was at this lady at this point. Charlie looked into a two-way mirror a few times, but other than that mirror, all he wanted was to get the door open. The doctor sat in her chair in front of the door and watched Charlie go into full meltdown. We tried to go into another room, and Charlie did say a word or two, with prompting from me, but he had pretty much shut down by then.
We left the diagnosis rooms and went back into the waiting area. Chuck had just arrived with Jonathan. At that point Charlie became animated at seeing his dad and brother and even though the doctor saw that, it didn’t change her opinion.
The pediatric psychologist/MD diagnosed him as autistic right there on the spot. She quoted back to me things that I had said, but altered the way that I had said them. She told us that I said, "Charlie has to be taught everything, he can not learn anything independently." I had not said that. What I said was, "Once we show him something he learns and never forgets it."
She said that his behaviors were classically autistic and that with the spark that he did show of intelligence he might be able to attain independent living. Our jaws hit the floor. Independent living??? No way! We knew about independent living from our time on the Center for Independent Living board. That was for people with severe disabilities. We never in our wildest dreams (nightmares) considered that his potential for developmental growth would be that low. Our big question was, if he is autistic, how long before he grows out of it.
We also had trouble with the doctor’s evaluation. By the time we got Charlie home that evening he was feeling warm and getting ill. We felt that the real reason that he not played and interacted as requested by the doctor was due to an oncoming ear infection and the fact that the doctor had set him off by locking him in that little room. I felt that she must have taken things that I said out of context and magnified his problems. It couldn’t be autism; he was just overstressed from the long overnight trip and the ear infection. My husband and I felt that professionals saw autism everywhere because that was what they wanted to see; maybe they were trying to fill up their autism clinics with kids so that they could keep up on the bills. Now we were dealing with a little paranoia.
We took Charlie for more hearing tests, and visual exams. The main reason for the hearing tests was because Charlie was constantly fiddling with his ears and plugging them. Charlie still does this; it is common with kids with autism. Also, you could sneak up on him from behind and call his name with no recognition from him at all. Charlie tested normal in everything. To tell the truth, I had almost hoped that Charlie had a hearing impairment, even a visual impairment, because you can fix that with glasses or hearing aids, but you can't fix autism.
I couldn’t believe that our baby was developmentally disabled and I felt that he would talk when he was good and ready to talk. After all, Einstein didn’t speak until he was 4 (although what he did say at age 4 was astounding2)! I did not enter Charlie into the Early Intervention program at that time, because I didn’t think that he fit the criteria for autism and didn’t want him to be labeled as such. I didn't want an autism diagnosis to stick to him. I didn't even want to talk about it.
1 The CHecklist for Autism in Toddlers (CHAT) is a screening instrument which identifies children aged 18 months who are at risk for social-communication disorders. http://www.asaoakland.org/chat.htm
2 Apparently when Albert Einstein was 4 and had been non-verbal up to that point, his mother presented him with his new baby sister and asked him if he would like to play with her, he replied, “Where are her wheels?” One would doubt that this child was truly autistic. Still parents are often reassured that if their non-verbal child does not talk, that he might just be the next Einstein.