William's Regression into Autism

William became autistic in November of 2000; two weeks after routine vaccinations.

I was really lucky that I immediately realized what was happening. I noticed that his eye contact had disappeared and started working on improving it and by the time he had his Early Intervention appointment in early January (we had to wait until after Christmas vacation) his eye contact was much better. Because I told EI that Will was autistic they sent a specialist to the interview and he started ABA (Applied Behavior Analysis) in March (we had to wait for that as well).

Will regressed horribly! Before he became autistic at 17 months, he was social, happy and bright. If anything was going on he wanted to be in the middle of it. He would sit on my lap and request me to read book after book to him. After he became autistic he wouldn’t listen to even a page. He started ignoring everyone. He started toe walking, stimming, sucking on his tongue and lip. He would constantly jump and run in circles and started making a high pitched keening sound. He made the sound constantly unless he was watching TV. He regressed to the cognitive level of a nine month old. He completely stopped talking and babbling. He lost every skill that he possessed. He wasn’t even capable of requesting a drink anymore. I would suddenly realize that he hadn’t had a drink in several hours and guiltily offer him one. He would contentedly sit and suck on a piece of bread in his highchair for hours. It was really weird.

He worked up to 26 hours a week of ABA plus a couple hours with an educator and psychologist. He didn’t have speech because he didn’t have enough language for that at first. But even with all of this he didn’t make any progress. He would master an activity then a couple of weeks later couldn’t do it at all. He spent his free time stimming and watching TV. He stimmed with his fingers in his peripheral vision and constantly held a crumb in his bent first finger – he used the remaining fingers to eat or play with. He sucked his lip all the time. He had constant diarrhea. And he had a lot of crapisodes! He didn’t sleep much. He would fall asleep around 11 or 12 then wake up at 3:30am. And he didn’t wake up quietly. I would sometimes hear him laughing in his room but more often it was his high pitched keen. I taught him, good mother that I am, to go into Brianne’s room when he woke up. That amazing girl slept through Will screaming and jumping on her bed with the light on and computer blaring full blast.

I am not exaggerating at all.

I didn’t sleep much for a couple years. I was sleep deprived. (One of my friends told me I was a “little wacky” during that time.) I remember right before Lizzy was born that none of my kids were sleeping through the night. I was only getting two to three hours of sleep a night. Then by some miracle, after Lizzy was born they all started sleeping through the night. I remember feeling so energetic and bouncy because I was getting hours more of sleep a night than I was use to!

Imagine that if you will, I had a newborn but was sleeping hours more a night. Sleep deprivation is an effect of autism for far too many of us.