By Bonnie Zampino
September 28, 2015
Like most parents of children with autism, I have been reading about the family in California who is being sued by several families in their neighborhood. The lawsuit contends that their child is a public nuisance because of his behaviors that his parents failed to fix.
One of the plaintiffs in this case stated “This is not about autism. This is about public safety.”
But he is wrong. This is absolutely about autism. It’s just not about the autism people hear about.
The media shows us feel-good stories, like the child with autism who gets to be the manager of the high school basketball team, or the boy with autism who goes to the prom with the beautiful girl, or the girl with autism who is voted onto the homecoming court. We light it up blue every April and pat ourselves on the back for being so aware.
But we aren’t aware.
Because for every boy with autism who manages his high school basketball team, there are 20 boys with autism who smear feces. And for every girl with autism who gets to be on the homecoming court, there are 30 girls with autism who pull out their hair and bite their arms until they bleed.
For every boy with autism who gets to go the prom, there are 50 boys with autism who hit and kick and bite and hurt other people. This is the autism that no one talks about. This is the autism that no one wants to see.
We aren’t aware.
One of the plaintiffs said “We’re not upset about him being autistic. We are concerned and upset about his violence (toward) our children.”
There is no way to be upset by this child’s behaviors and not be upset about autism.
Autism and behaviors go hand-in-hand. Why? The behaviors are communication. Individuals with autism often can’t communicate in a way that typically functioning people can understand. So they do things to get their needs met. And often the things they do are scary and violent.
We aren’t aware.
My son, who is the same age as the child in this story, was extremely aggressive when he was younger. He did all of the things that the child involved in this lawsuit did. My son ran after other children on the playground just to push them down. He hit. He kicked. He bit. He pulled hair. And I never knew what was coming.
For the longest time, I would flinch when he ran up to me. I didn’t know whether he was going to hug me or hit me. Can you imagine, as a mom, what that’s like? To flinch when your child runs to you?
We aren’t aware.
Because I didn’t know what my son was going to do to other children, we stopped going to the park. We stopped going to the Mommy and Me class at the library. We started going to the grocery store at 6:00 a.m. when most people weren’t around. He didn’t go to daycare but had a sitter at home so he wouldn’t be around other kids in a daycare setting. I essentially isolated him in order to keep other people safe.
Can you imagine what it’s like to be a mom and not be able to take your child to the park? Or have your child attend birthday parties? Or have play dates?
We aren’t aware.
Because of my need to isolate my son, I also isolated myself too. I watched from my window as other moms in the neighborhood sat in their camp chairs and chatted while their children played. I couldn’t join them because my son couldn’t be around the other kids.
Once, a mom asked if my son could come to their house and play with her son. Can you imagine what it was like to feel so excited and then feel so ashamed when, after explaining my son’s issues to her so she would be aware, that invitation was rescinded?
We aren’t aware. Not at all.
But we can be. We can open our eyes and understand that autism isn’t all about the high functioning child who is “quirky” but OK to be around. Autism isn’t all about the six-year-old who can play Piano Man better than Billy Joel.
Autism can be hard. Autism can be sad. Autism can be messy. Autism can be violent. Autism can be isolating.
Once we become really aware, lawsuits like this won’t happen. Why? Because instead of putting blue lights on our front porches, we will go outside with our kids and we will help them play together...typically functioning kids and kids with autism. We will get to know our neighbors and we will embrace the children with behaviors and embrace their parents along with them.
We will learn what things trigger our child’s classmate who has autism so that we can help the children interact while avoiding things that will cause aggression. We will be a true village, including those who can model appropriate behaviors and those who are trying so hard to learn them. We will work on teaching our children not to hit and how to avoid being hit.
The parents involved in this lawsuit, on both sides, need to do more. More education, more understanding, more inclusion and more involvement.
Now tell me, is autism the real public nuisance?
We can become aware ... if we really want to.
October 2, 2015
The comments in response to my last blog post taught me something very important. See, I was operating under the assumption that we, as a society, were not aware of autism in all of its forms. But those who commented showed me that I was wrong. You are aware.
You are aware of autism. You just don’t understand it. It’s not something that directly impacts you, and so you don’t really care about it all that much. And why should you?
Unless you are the caregiver or educator of an individual with autism, caring is rather inconvenient. After all, you are busy raising your typically functioning children. That keeps you pretty darned busy. You’re helping them with homework and driving them to the mall or to soccer practice. You’re diligent about keeping them safe and helping them grow up to be their very best. And that’s exactly what you should be doing.
That’s what all of us as parents should be doing.
Autism? Well, you know it’s out there, you’re thankful that you don’t have to deal with it and you plan on keeping it that way.
But we are operating under the assumption that you raising your child and caring about mine are mutually exclusive. What if I told you that both of us — you, with your typically functioning child and me, with my child with autism — could both do things together that would benefit the well-being of our children and that would enable all of our children to grow up to be their very best?
We can… if we want to.
Many of you asked me for solutions. I have several. Here are the top three:
1.) Become trauma informed.
Individuals with disabilities experience stressors every day simply from painful sensory input, feeling overwhelmed and anxious and being unable to do what others can do. These stressors accumulate over time and do the same thing to the brain as does a major trauma such as sexual abuse.
When an individual experiences trauma, changes happen to the brain. These same changes can also happen in response to the brain receiving repetitive stimulation. And these changes can cause a child to show signs like hyperactivity, anxiety and impulsivity, behaviors that often appear as inappropriate and aggressive.
But it’s important to understand that these are either responses to severe anxiety or an attempt to stop something from causing them to feel anxious. People with autism aren’t being malicious when they are aggressive. Their brain is simply initiating the “fight or flight” response.
2.) Become a behavior detective.
All behavior has a function, meaning that it is done to meet a need. There are only a handful of functions. Behaviors can be sensory related in that an individual may be seeking or avoiding sensory input. Behaviors can be used to attain an item, escape a situation that is upsetting or gain attention. That’s it.
But once we understand function, we can get to the “why” of a behavior. And once we know why someone is doing something, we can make simple changes to the environment so that they don’t do that behavior any more.
3.) Become an interactive parent.
In my last blog, I talked about us being a village. Many of you with “normal” children stated that you didn’t want to live in any village where my son and I reside. I hate to break it to you, but your chances of escaping this are dwindling.
Institutions are closing. People with disabilities are coming home to their communities. Inclusion is the new normal, and people who struggle with challenges are moving to a street near you.
This is your chance to get out there with your typically functioning child and teach them the skills that they will need throughout their lives. If you help them interact with the child with autism next door, you’ll be able to make sure they are safe while teaching them how to handle disagreements. You’ll show them how to help calm a situation. You’ll model for them how to be kind and compassionate.
And those of us with children with autism will be out there with our child making sure they aren’t hurting yours while teaching them the very same things! And we can do this together.
And for those of you who are aware but don’t feel that it’s your responsibility to understand, I have a recommendation for you too.
Bookmark this blog post. You’re going to need it.
Not only will someone with classic autism probably move down the street from you at some point in the not so distant future, but you have a very high risk of autism becoming a part of your family. According to the latest numbers provided by theCDC, about one in 68 children were identified with ASD.
And when you find out that a child in your family has autism, you’re going to want to give this blog post to the neighbors down the street who don’t want their kids playing with yours