Autism’s hard to love club
Well, this isn’t the first time I’ve found myself on the wrong side of popular. I have a daughter firmly planted in autism’s “hard to love club”.
She is well beyond “cute toddler” stage; where she had bright blue eyes, ringlet curls, and deep sweet dimples. And her behaviors could be passed off as “age appropriate”.
She is a teenager now.
She is overweight. It isn’t her fault; we had her on medications that caused her to gain weight. A lot of weight. But there isn’t anything endearing about an overweight teenager rampaging through a house or classroom.
She could care less about hygiene. It’s not uncommon to see her with wildly unruly hair, food in her teeth, stains on her shirt, or even smelling of body odor. Of course, her dad and I do what we can, but we aren’t with her every minute. At school, she may get food on her face. Sometimes it gets wiped off, sometimes not.
Teachers aren’t exactly begging to have your child in their classrooms. People aren’t knocking at your door asking if they can “babysit” your child. Doctors reject you, clubs reject you, and summer programs reject you. Anyplace where rejection can happen, it’s going to happen to your child.
She is loud and she is scary. Imagine the worst tantrum you’ve ever seen from a toddler. Now picture that with a teenager the size of an adult, with an adrenaline infusion like those of a person lifting a car off of a loved one. That’s what it looks like for us. Everyday.
Every. Single. Day.
People in the autism community understand and embrace the “hard to love club”, right?
Nope. They can’t.
Autism organizations and big names can’t risk talking about autism and aggression/violence in the same sentence.
You see, there has been some bad violence around the country lately. Almost every time, some newscaster throws around the “autism” or “Asperger’s” label. So good people are working very hard to clear up that little public relations snafu.
But what if you have a child who is capable of great violence and they happen to be autistic?
Who can champion the cause for the “hard to love club”? None of these kids are “cured” of anything.. so no book deals with fairy tale endings. No team managers getting into games here. No sudden youtube fame. Many in this club can’t even speak. There isn’t going to be profound poetry or music coming from anyone in this group. Well, not without a lot of treatment and help. Does anyone care about potential except the parents? And we all know parents are less then nothing when you deal with professionals, insurances, schools, and politicians. Silly parents can’t fund treatment and help themselves.
And let me just tell you….young adults in behavior programs at the universities aren’t going to school to work with this club.
Would some gorgeous Hollywood actress make a commercial in support of the “hard to love club’?
And would she be able to stand up to the criticism that would come from the “easy to love club”?
Many people have told me to shut the F*** up. Not to talk about aggression and autism. That I’m not helping “the cause”. That I’m being selfish.
If you’re in the “hard to love club”, you aren’t alone. We don’t have much, but we have each other. Our club will grow. Problem behaviors are a part of autism and if autism is on the rise, so are behaviors.
We can’t really have conversations with each other. You know how it is. Phones get ripped out of your hands, your ears ring from taking blows to the head. But just know that someone understands.
So here I am sitting on the wrong side of popular. Again. But I’m happy you’re here too. We have each other. We aren’t alone.