Children with autism do not like surprises. They do not like anything that is unexpected or a change to the routine. Unfortunately we didn't know this until fairly recently. We've had some pretty hair-raising meltdowns over the past few years. And we're still learning.
A Little Backstory
When Jack was about four, he and Charlie had a daily ritual. When Daddy got home from work, he'd ring the doorbell. Jack would run gleefully to the door, screaming, "Daddeeeee!!!" and fling it open. One day Daddy came home tired and opened the front door with his key, forgetting to ring the doorbell. Jack was inconsolable. He cried for about 45 minutes, all the while sobbing, "Go back to work, Daddy! You have to do it again!"
Anything unexpected would set him off, to varying degrees. He was very easily frustrated. We felt like we were living with a tiny rageaholic, walking around the house on egg shells, never knowing what might set him off. We just thought we had a very sensitive child, but what we now know as "low frustration tolerance" was a major clue that something was different about our boy.
At about 4 or 5, Jack started getting really angry and frustrated with me whenever I would make him do something he didn't want to do (ie. leave the park when it was time to go home). He would say, "I hate you!" Ouch. It stung, but I realized he was mad at me and was just trying to say the meanest thing he could think of at the moment to hurt me. When I casually mentioned this behavior to other moms, they would look at me like I was crazy. Don't other children tell their moms they hate them when they're mad? Isn't this normal? Maybe not.
When he was in 2nd grade, he developed the habit of saying, "I'm so stupid!" when he'd get frustrated. He'd also say, "You should hit me! Get a knife and stab me! I deserve to die!" Of course, we were very alarmed by this. Nobody wants to hear their child of any age say these things, but a seven year old? We talked to his pediatrician and his teacher at school. His doctor ran some blood tests, but didn't find anything wrong. And again a big clue was missed.
Learning to Avoid the Meltdowns
I've learned not to do anything too suddenly, to remember that if he doesn't seem to be responding to me, it helps to walk right up next to him and calmly repeat what I've asked him to do. Sometimes a timer helps by giving him a set amount of time to finish whatever he's working on and move on to what I've asked him to do (take a shower, get dressed, take your medicine, etc.). We've learned to give lots of warnings that a transition is coming up soon. Telling him he's got to do something "Right Now!" is a really bad idea.
Children with autism are unable to filter out individual sensory input the way most of us can. With so many sounds and smells creating a chaotic world, they tend to retreat and superfocus on one thing at a time. It's calming to tune everything out and only focus on the computer or the video game you're playing or the picture you're drawing. I've learned the hard way that if I shatter his focus too suddenly, it can short circuit his whole system and send us down the road of no return.
It's hard to have a child who has outbursts that make other parents look at you like you're doing something wrong. People who don't know any better tend to blame a child's behavior on poor parenting skills. We've had some really ugly incidents that have left both of us in tears. Afterwards he's always loving and contrite, but in the moment it can be really scary. Especially as he gets bigger and stronger, he's harder to control. This morning I read a fabulous column on Managing Autism Meltdowns. At the end of the article is a link to a two-page PDF file that can be printed out and shared with your child's teachers and caregivers. Really good advice!
Does your autistic child have terrible meltdowns? What has worked for you? Please feel free to share your experiences in the comments section.