Living with Autism and an introduction to my son and some of the challenges
I have a son who is going to be 30 years old this year. The effects of having a child with autism (and then raising said child) takes its toll on you physically and mentally and it is hard work. Learning that your child has been diagnosed with “Asperger’s autism” (or whatever diagnosis they used 30 years ago) is extremely hard to accept. We found we had to learn how to teach him by using special techniques (behavior modification) and then learning how to live with the Asperger’s autistic disorder.
When “Steve” (not his real name) was 18 months old he was given several diagnoses. Actually he was diagnosed earlier but I was just unable to accept it. Thirty years ago doctors did not want to label a child with autism because that diagnosis would be carried with that child for the rest of his/her life. He was diagnosed with severe ADHD, PDD (which is pervasive developmental disorder) and autistic characteristics.
Autism and lack of social skills
The lack of social interaction and the limitations placed on you as well as the activity level is incredible.
I remember three of my friends; we all had boys within one month of one another. My son’s birth fell in the middle of the four. We would get together for outings. The other boys would play together and give each other eye contact. If we met at a park, the other boys would be on a blanket in the same place playing for hours with their toys. While the boys were playing the other mothers would have the opportunity to chat, but I had to watch " Steve” safety reasons. Before he could walk he could crawl faster than any child I had ever seen. No social interaction.
Autistic children do not like change - change of any kind
Every time I would put “Steve” in the car to go anywhere, he would begin to cry and would not stop crying until we drove back into the driveway. A trip to the doctor or the pharmacy was a hardship. My husband and I were so limited to what we could do. It was difficult if not impossible finding someone who could babysit for our child. The change of having a different person in the house was difficult to deal with.
Another effect of having a child with autism is that we had to forget about going on a vacation for enjoyment and relaxation. Once again that represents change. We found that when we went on vacation we would have to go to the same place, stay in the same room and simulate what we had done on previous vacations. There is no getting around that one. I must say sometimes you wonder if a vacation is really worth it.
Autistic children have a high activity level - never tiring and thus changing your life dramatically
“Steve’s” activity level was extreme. Sleep was not required. Simple errands were difficult.
Due to his lack of sleep, and mine,I was unable to work. I could not find anyone that could “take care” of “Steve”. Mother’s Day out programs or a 2 hour program were out because of the disruption to the other children.
I was told that if he were in another family he would have probably been institutionalized, extremely abused or dead. In fact, one neurologist told me to institutionalize “Steve”. I was out of that office very quickly and used some choice words before I left.
Another neurologist scheduled several tests; one being an EEG. Electrodes were placed all over Steve’s head and connected to a machine that measures brain waves. In order for the test to be done correctly he had to remain still. There was never any question that Steve would have to be sedated and then awakened after the test was over. We were in the room with him. It took five sedation shots.
Autistic children and language skills or the lack thereof – everything is black and white
Echolalia interferes with social interaction and learning skills. Autistic children only know that things, anything, is black and white - there is no gray so you have to be specific when talking to an autistic child. When my son was approximately two years old I picked him up from Easter Seals School and on the way home, I as always, am in the teaching mode repeating things to him. All of a sudden he tells me “Mom, stop perseverating”. I actually had to look that one up in the dictionary.
Autistic children with Obsessive Compulsive Disorder
Autistic children often have obsessive compulsive disorder as well. Some autistic children rock back and forth, run around a table over and over again, and/or wash their hands every five minutes to name a few OCD symptoms. What one has to do in order to assist this child to have appropriate behavior and not be OCD is to correct the child when he/she is doing the behavior - and you must be consistent.
Autistic children and changes in your life
Having a child with autism changes you live forever. You learn special techniques to be able to have some control over the behaviors. It is a huge responsibility and will take its toll on you physically and mentally. Now that my son is going to be 30 years old I find myself continuing the “teaching” mode.
I continue to correct poor social and daily living skills. Does all the energy and time spent ever make a difference? Sometimes they do in a small way to the parents, but for any step forward in the autistic child you must be grateful.