A Tale of Two Sons
I have raised two sons with autism. They wear the same size shoe, but that's where the similarity ends. While pregnant, I did everything I could to assure there wouldn't be any problems with the boys. I saw the doctor regularly, ate well, didn't smoke, and consumed no caffeine or alcohol. I also made the decision to have my children by natural childbirth, not wishing to expose them to anesthetics. When you make plans, God laughs.
When my older son JJ was born, he had the cord around his neck, a low Apgar, a white blaze in his hair, and rarely stopped crying. He rapidly developed a skin rash as well and gained almost no weight. As it turned out, he was allergic to the cream we had been given in the hospital. As a precaution, his doctor declared that he could have only breast milk, wear only cotton cloth diapers and cotton clothes, and that his clothes be washed only in Ivory Snow. Under that regimen his weight gain rose to normal levels, but he still cried often and didn't sleep through the night for nine months, about the same time he transitioned from breast milk to soy milk. We took him straight to cup, which after an agonized outburst I will never forget, he seemed to accept well.
When JJ was less than a year old, my husband was offered what he felt was a better job in California. I was uncomfortable with the idea of moving. We had only lived in Saint Paul for two years, but I had made friends there and a friend I already had from college lived there too and was a willing babysitter. JJ's pediatrician was in St. Paul as well and he had been both available and extremely diligent. Still, my husband's parents lived in California, so we would be gaining proximity to grandparents. It seemed like a reasonable trade. JJ did remarkably well on the cross country trip, and seemed to have made a developmental leap. Other than complaining loudly in the morning if he wasn't immediately fed rice cereal and soy formula, he was such a happy baby, so much so that people at the hotel where we were housed for our first month remarked on in it. To everyone's further amusement, he had begun to crawl very rapidly, scooting down corridors at warp speed.
Other than picking up colds and respiratory infections we had never seen in St. Paul, and crying his heart out in the church nursery, JJ seemed to be doing well in California. When he was eighteen months old, I went back to work at night, leaving him in the care of a fellow choir member from church during the hours I slept. A week before he was two, he surprised us all by beginning to read spontaneously. His first word was gleaned from a commercial, “Wards.” The second was like it, “Sears.” All the brands of cars soon followed.
We really thought we had a genius on our hands, but he was confounding. He was a relatively late walker, and when I started him at the local daycare at age two, had trouble adjusting. He was also very difficult to potty train and was limited in his interactions with other children. In some ways he was Jekyll and Hyde. He had a sunny smile both adults and other children loved, but could also become extremely angry and even bit other children. His fine motor skills were excellent, his writing and drawing way ahead of other children his age, but his gross motor skills poor. He could barely manage age appropriate play equipment. JJ entered an advanced kindergarten at a magnet school because of his advanced reading skills, but the school nurse saw soft neurological signs. A visit to a neurologist produced a diagnosis of minimal brain dysfunction, but the doctor involved told us he really thought JJ was fine and was using the diagnosis to get insurance to pay. JJ was still having so much trouble relating to the other children, we decided, even though we could scarcely afford it, to send him to private school.
When JJ was four, his younger brother DC was born. His birth, again without anesthesia, seemed flawless. His Apgar was high and his early developmental milestones, including walking, were for the most part ahead of schedule. I thought that the second time around, I had the easy one. Then things began to change. At ten months, he weaned himself, pushing the breast away. I was disappointed, as I had been hanging out with some women with the La Leche League and would have been more than happy to continue. As he approached age two, I watched with dismay as he lost words he had acquired early, until he was finally mute. His skills regressed from ahead of normal, back to the level of three months. At first we thought he had lost his hearing, but that proved not to be the case. Finally at age two and a half he was diagnosed with autism. At the same time, his brother went from a bogus diagnosis for minimal brain dysfunction, to a real one, for autism in the residual state.
DC, diagnosed young, had interventions of all kind, practically from the start. We went together to UCLA, where we had a course from a therapist following the teachings of Ivar Lovaas, the basis for ABA. He had speech therapy. He had another therapist, in our home, trained by Lovaas himself. He was in special eduction from the outset and stayed there throughout his school career to age twenty-two.
After two years in a private school, JJ went back to public school. At various stages he was in regular, gifted, and learning disabled classes. He had speech therapy, which was less than successful, something that was blamed on him by his therapists. He had social skills training which had more impact. The most useful things he had were a cub scout troop with normal kids and youth group at the church. Both were great socializing experiences. In High School he was the only child they'd ever had who was both working under an IEP and up for valedictorian.
Fast forward. JJ, my older son, the one who was born with obvious problems, now is almost forty and has two bachelors degrees, a masters, and a PhD. He works in a government laboratory in another state, lives fine on his own, and comes home for Christmas. In many way's JJ was the jumping off point for my novel,Dark Awakening.
DC, who at first seemed the golden child, lives in a house not far from us, with one roommate and twenty-four hour staff. He's thirty-five. The only paying job he has ever had, he was only able to hold for about three weeks. He is brilliant with computers, but his behaviors keep him from capitalizing on that skill. He reads and writes well, but his spoken language would be primitive for a two year old.
What one might take away from this is that early intervention, even when delivered by experts, promises no happy ending. Another conclusion might be that all is not lost without it. Both are possibly true, but a better thought is that persons with autism, even in the same family, can have very different courses and very different outcomes. The happiest one is that even the most difficult baby can turn out pretty well.