Just watched the old movie, “Ten Things I Hate About You” again and relived my lost youth and life BD (Before Diagnosis). Not that it was a totally carefree time, but life’s complexities have increased exponentially. This led me to think of the many things about autism those of living it endure on a regular basis and really hate. And there’s a lot to hate about it. More than I can name in the length of a pithy blog entry, but here goes…in the spirit of one of my favorite teen movies, I have compiled my own list:
Ten Things I (Really, Really) Hate About Autism:
- Wandering—Ryan scares the bejesus out of me with his silent wandering. He has escaped from our walled property several times, and it’s always heart-stopping. There is no sitting around and relaxing with an autistic child.Wandering is a leading cause of death in the autism community. See my March 25, 2012 blog entry if you doubt this.
- Potty Accidents—self-explanatory, but still difficult. I haven’t tried to take Ryan to the bathroom out in public yet…don’t know how he’d feel about it. I’d like to take Ryan back to the East Coast to visit family and friends, but can’t imagine how we would get through the 14-hour trip. If he had an accident on the plane, I don’t know how I could clean him up without disturbing everyone around. There simply isn’t room in those tubes on airplanes they call bathrooms.
- Meltdowns—Ryan is an absolute dream, very easy-going and happy. My oldest son, who has Asperger’s, and is now an all-around fantastic kid, was not always. The smallest things could cause an explosion of nuclear proportions and could be scary when he was in full-on mode. I am thankful this stage passed and I now have the most awesome teenager ever. I know other families who deal with meltdowns on an almost daily basis and they have my sympathies.
- I Have a Name?—Teaching Ryan that he is “Ryan” has been an on-going challenge. I sometimes think he is responding to my rising voice repeating his name over and over more so than realizing I am calling him—and this is only when we’re in the same room together. Forget about any response when he wanders into a nearby room and I’m trying to locate him.
- Tummy Troubles—enterocolitis accompanies autism far more often than most medical professionals realize. We parents know it, though. Diarrhea, constipation, painful ulcers in the digestive tract contribute to many of the behaviors associated with autism.
- Stimming—let’s face it, it can be very annoying to have a child repeatedly doing or saying the same thing. Ryan doesn’t really stim, but my oldest did. He would pace rigidly around the house for hours, often tossing a plastic sword…over and over and over again. Try having a conversation with someone tossing an object repeatedly. Fortunately, he now finds taking walks outdoors eliminates the need to do this.
- Seizures—epilepsy and autism are frequently co-morbid. It is estimated that autistics suffer from both conditions 35 – 40% of the time, and also that another 30 – 35% of autistics have subclinical, or absence seizures. Ryan’s arms sometimes shoot stiffly up, his fingers splay and he shakes and has uncontrollable tremors. Don’t know that these are seizures, but it sure looks scary and is not normal.
- Can’t Communicate When He’s Hurt—Just last night Ryan fell and screamed and cried for almost half an hour. He can’t tell us that he’s hurt, so we’re left to try to check him out for bumps, scratches, bleeding, etc. He loves to climb, and he does sometimes fall. If I don’t see exactly what happened, I am left to wonder if he hurt himself or is just tired and frustrated. Of course "Can't Communicate When Someone Has Hurt Him" is an autism parent's nightmare.
- No Fear of Danger—Imagine a child who has no concept that he is engaging in a very risky behavior. Ryan loves to climb in our windows and stand on the sills. We live in Hawaii and don’t have air conditioning so windows are always open, and a screen will not hold Ryan’s 42lb body if he leans against it.
- It’s Expensive—really, really expensive. I know families who were bankrupted by it…we are fortunate we are able to afford treatment and therapy for Ryan, but and I always wonder if we’re doing enough. And to be blunt, I find there are practitioners who take advantage of parents or school systems by charging whatever they feel the bill payer will bear.
After compiling this list, I realized I could go on and on…how it’s stolen lives, how insurance companies have been able to skate by without covering autism therapy calling it “experimental”, the lack of knowledge and compassion by most of the medical community, the woefully insufficient response by the federal government…etc., etc.
How about you—what do you hate about autism??