Children with autism struggle to behave according to society’s rules. They spend countless hours in therapy in an attempt to learn neurotypical behaviors so they can successfully socialize and participate in activities most people take for granted, like attending school or eating out at a restaurant.
It’s easy, as a parent, to get caught up in the need to help your child conform. After all, the ability to follow rules determine one’s success in life. We all want our children to succeed.
These days, we celebrate individualism on social media and pay lip service to what makes people different. We’ve all seen the meme of the little ballerina hanging upside down on the barre while the other girls obediently follow the teacher’s pose.
Be like this little rebel, the meme says, and everyone on social media enthusiastically agrees.
Except autism parents. We know that’s not the case in real life.
People may theoretically believe individuality is a valued trait, and celebrate the cute little rebel ballerina, but in practice, that’s not how life works. If that little ballerina continued to do her own thing, she would be kicked out of dance class, and her mother would be judged by the teacher and other moms for raising such an ill mannered child that disrupts the experience for others.
This scenario plays out every single day for autistic children and their parents, as their behavior in public and in school is rejected and declared unacceptable. They are removed from the regular classroom because they become too excited and make too much noise, often given a time out as if they had acted with the intent to misbehave.
The glue that holds society together is the ability of its participants to follow rules. If everyone acted the way they wanted all of the time, society would crumble. That’s not society, it’s anarchy. Parents of autistic children understand this, and begrudgingly accept their children must change their behavior or spend the rest of their life at home, under virtual house arrest.
Don’t get me wrong. Some autistic behaviors are unacceptable and do need to be changed. We can’t all hit someone when we don’t want to participate in non preferred activities. You may want to smack your boss and he may deserve it. But again, that’s anarchy and if we totally abandoned civilized behavior, we’d all be living in caves.
Still, sometimes when an autistic child fails to behave according to society’s rules, that so-called failure actually reveals that the rules of our society aren’t in alignment with how human beings should live.
I realized this last year, when my son engaged in unacceptable behavior while receiving gifts. He has a unique ritual that used to make me cringe and apologize to the gift giver.
Now, I celebrate and encourage it.
When Tosh receives a gift, especially a new toy, he enthusiastically opens it, ripping off the paper and ribbon and then tearing into the packaging. (When he receives clothing or other practical gifts, he quickly tosses it aside like all children.) After receiving a toy, neurotypical children express delight and begin playing with it appropriately.
Not Tosh. The first thing he does after opening a new toy is inspect it, soaking up everything it has to offer with all five senses. He looks at it from every angle. He smells and tastes it. He tries out all the working parts.
Then he gathers up the packaging and adornments and repacks and rewraps the gift. Then he hands it back to the giver, which has sometimes been misinterpreted as rejection. It’s not. It’s a request to re-enact the giving process.
We use social stories to help him understand events ahead of time; social stories are simple books parents and therapists create that show the autistic individual what will happen and why. Our social story for gift-giving holidays uses this language modeling: Merry Christmas! I love you! Here’s a new toy!
He wants the gift giver to repeat this language so he can open the gift again, and he expresses the same excitement he did the first time. Then he repackages it and the behavior continues, off and on, for anywhere from half an hour to a couple of days, until I finally grow weary of it and throw the packaging away when he’s not looking.
This behavior used to mortify me, because I worried the giver would be offended and assume Tosh didn’t appreciate the gift. I used to quickly make a joke about autism and reassure the giver that with time, Tosh plays with every toy he receives, which is true.
I don’t apologize anymore for two reasons.
First, if someone knows him well enough to give him a gift, that person is probably already familiar with the fact that he has autism. Five years into our diagnosis, nearly everyone understands and accepts that he doesn’t behave like a neurotypical child.
The other reason is much deeper and touches my soul.
Tosh enjoys giving and receiving more than he enjoys toys. It’s not the “here’s a new toy” part of the social story he enjoys the most. It’s the “I love you.”
Let that sink in. Autism strips away understanding of society’s rules and produces a human who is motivated to behave according to primal desires. Our most primal desire is to love and be loved.
We don’t give gifts for the possessions. We do it to express our love. Tosh is only seven years old, but because he is autistic he understands this universal human truth. It’s something parents try to instill in their neurotypical children and become frustrated when they fail. Heck, most neurotypical adults never grasp this concept and, as a result, endure miserable lives in which they feel unloved and fail to successfully express love to others.
Yes, Tosh needs to learn how to conform to rules to participate in society. And yes, rules are the foundation of society.
But some of society’s rules are bullshit.
These rules may maintain order, but they do so at the cost of compromising some of the core qualities that make us human. Some of those rules are crumbling as we become more aware of the inherent wisdom in people who don’t conform to society’s rules, not because they enjoy being a rebel, but because something prevents them from doing so.
Instead of seeing what’s wrong with autism, I choose to see what’s right. I hope that society eventually agrees with me and changes its approach to autism by loosening its rules to allow for inclusion and, in the end, create a better world for everyone.
Heather Anderson is a blissfully happy autism mom and lover of life in Southern California who is on a mission to help autism parents rediscover their happy place.
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