Our Experience

This is the hardest article yet to write about the story of raising an autistic child. Again, this is ONLY my experience. I’m sure that some autistic individuals may read this and I particularly want you to know, if this does not apply to you, then it doesn’t. This information is about mine and my son’s journey. I never mean to hurt anyone’s feelings. I write to hopefully help others navigate the sometimes daunting world of autism by reading about our triumphs and trials. You know, hind sight is better than foresight.

“Doctors”

As early as the age of 3 years, “well-meaning” church folks were following me outside the church to give me medical advice about how to raise my son. Although they did not work in the medical field, I was “strongly advised” to take Lucas to the doctor and “get him on Ritalin”. He had outbursts that were disruptive in Sunday School and other church activities. I simply was not going to drug my child to make other people more comfortable. When I was not trying to make him conform to the rituals of church activities, he was not nearly as difficult. I decided that I was going to give him time to grow up before making the decision about medication, so as best as I could, I tried to provide him with a safe space to grow into who he was going to be without drugs.

And Other “Professionals”

When the nurse brought Lucas to me in the hospital, after I had held him in the delivery room, I began reading to him. I think that I would have started reading to him in the delivery room but he was born by Cesarean section and I had to just lay there and wait for my incision to be mended, so I couldn’t sit up and hold him. We read to him every day and night and before long, he was reading to us. I am not talking about memorization. By the age of two, he was reading books and newspapers that he had never seen. This is called “hyperlexia” and many autistic individuals have it. As he approached the age for kindergarten, although it was against my better judgement, I put him in a day care facility where he was SOON discriminated against. That didn’t last long. I took him home. Again, I was advised to drug him by non-medical people. I always found it interesting that if I had advised people to medicate their child, as a nurse, I would be in trouble, but non-medical daycare workers could do just that. It made no sense. Although I believe that there is a place for almost all medications, there was no way that I would allow my child to be put on psychotropics at that young of an age. A lot of those drugs have negative side-effects after being on them for a while. If he had to be medicated at some point in his life, I wanted to wait until it was a quality-of-life issue, HIS quality-of-life, not mine or anybody else’s.

As Lucas grew up he began piano lessons at the age of six years. Although he is not a savant, he does have a very special gift in music. He has chromesthesia and perfect pitch. He took to the piano easily but he never really loved it. We had a family member, who is no longer a part of his life, that was adamant about him practicing and drilled him daily to measure his progress. If Lucas ever had any affection for the piano, being pressured to perform changed that. Now, with a beautiful, bright toned, black lacquered Yamaha U3 piano sitting in the living room, and a degree in music, he does not play. Music comes easily, but holds no charm, for him.

Apathy

While he was growing up we went everywhere. We bowled and swam, a lot. He was home-schooled and had to have some physical education so we joined the Y.M.C.A. He had swimming lessons and a bowling tutor. Life was good when we were active. Later I found out that he didn’t actually enjoy any of these things. He just did them because he thought that he had to. He found no joy in the things that most children enjoy.

He did like zoos and as I mentioned before, museums, so we frequented those. In the museums, he pretty much just ran through them over and over, for what seemed endlessly, for hours. He would stop to look at the displays but he was more interested in the pathway through the buildings. Only the animals at the zoos really gave him cause to pause. He has always loved animals. Day trips to these places were the best because then it was just the two of us going. If anyone else went, the day was sure to dissolve into mayhem. I always knew that he had to have space to just be. Other family members always wanted him to conform and I always knew that was not possible. You can’t change an apple into an orange. They’re different. Lucas was noticeably different and I supported him. Although I so wished that he could enjoy some things that other kids loved, I did not expect him to be like anyone else. When I was growing up, I was pressured to conform and it was horrible. Although I am not autistic, I never could just do, or not do, anything just because other people reacted that way. I didn’t expect him to either.

Alone In A Room Full Of People

Something that was noticeable about Lucas was the obvious detachment that he had with his surroundings. He seemed to move through them but never be in them. It had a dissociated appearance. He seemed to be absent from his own body at times. The truth is, I believe, based on things that he has told me, everything in the environment bothered him so much that he just went inside his own mind. He has always been sound and light sensitive and when he looks up, especially at the sky, it scares him. The fear of looking up is called anablephobia. I suppose he has that to deal with also. It infuriates me to think that when he was suffering with all of these issues, all anyone wanted was a pill to make him easier to tolerate. Some might say that maybe those magic pills would “cure” all these unusual tendencies, gifts and phobias. No, they won’t. So much of this is his version of autism and so far, that’s not something that can be changed. He doesn’t want to be autistic, so if I could fix it for him, I would. He completely understands what autism is and he hates it. His place on “The Spectrum” is filled with anxiety.

Progression

After Lucas graduated from college with his Bachelor’s Degree, he went on to the graduate program. In March before he was to finish in May, our house was hit by a flurry of violent tornadoes within about 30 minutes. We had three direct hits and a fourth was coming straight at us but bounced to a nearby town instead of hitting us that night. Our home was destroyed with us in it and Lucas and I separated from his dad that night. There was a lot of tension between them. I went on to be a full-time nurse and Lucas was happier than he had ever been. The constant tension in the household of a couple who could not get along was turning into something that he could no longer bear. I have since found out that those years took a terrible  toll on his mental health. You know, again, hindsight is better than foresight but if I had those years to live over, I would have made that change at birth. I home schooled Lucas because he would have been bullied mercilessly in the local school by students and teachers alike, so I couldn’t have changed that unless I had moved to a major city where better schools were available, but looking back, that might be what I should have done. The point here is this, I did what I thought that I should do at the time. I did my best. That’s all that anyone can ever do. I thought that staying in that relationship where I could stay with him and school him and protect him was the best thing for him. Now, I’m not so sure, because when he was diagnosed recently, the therapist told me that all those years in a difficult living arrangement followed by the destruction of the tornadoes had devastated his mind. Now, at the age of 26, he has a therapist and a psychiatrist. I had tried to get him into therapy for years but he refused. Finally, one day, he looked at me and said, “Mom, I need help.” and he got it. Lucas does take some medicine now, by choice, HIS choice. A decision that he made as a mature adult with autism, a decision that he made to feel better. Slowly, but surely, my sweet boy of long ago is making an occasional appearance. Although I know that we have a long road ahead, it does lead to a better place. He has some peace. When he was little and  people would ask, “What do you want him to be when he grows up?” I would answer one word, “Happy.”

I think we just might be getting there.