By Maxine and Daniel
I hear so many stories of professionals with no or limited autism knowledge being less-than-helpful to families and children and I think, ‘I need to take up basket-weaving or Spanish Regional Dancing…any diversion that doesn’t involve the frustration of trying to change understanding of autism within systems of support that are rigid, inflexible, and don’t seem to learn from their mistakes.
Professionals misinterpret what they see with our children, and their responses—based on incorrect assumptions—are then way off the mark. It causes anxiety and frustration in the child and in the home, harming the family dynamic.
What a way for our children to live: being misunderstood at every turn. The thing is, it is the same stories I hear day after day, year after year.
Children with ASD are expected to learn and respond in typical ways but are not given the supports or tools they need in order to be successful. They may be provided with excellent Individual Education Plans and be taught by caring professionals, but most of those professionals have no idea how to teach (often very bright) students with slower processing speed, sensory processing disorder, communication challenges even in verbal children, and emotional regulation that lags behind their peers. The IEP isn’t worth the paper it’s printed on if the staff don’t have the knowledge, the time, or the resources to deliver it.
One of the most common ways schools harm the family and the child is in their response to incidents of aggression by children with autism. The response in our school system is not to see how they might have they failed the child—not to figure out what they have neglected to teach him or her--but instead to chastise the student and frighten parents by editorializing behaviours as aggression. They fail to step back and view the situation through an autism lens, because if they did, the autism issues would come into sharp focus. Let me give you an example:
Two elementary-aged children on the spectrum are without individual attention in a regular Grade 1 class. One of these children knocks down the Lego castle the other autistic child has built. The castle-builder pushes the peer to the ground. I put on my autism goggles and what do I see?
Possibly this: there are sensory issues around proprioception. The child is not applying the right amount of force to touching the castle, and so inadvertently destroys his classmate's work. The destruction was unfortunate but unintentional. This child needs a sensory assessment and appropriate programming.
Or this: the approaching child doesn’t know how to enter a play situation and connect with a classmate and so pushing the castle down was his awkward attempt to initiate social contact. After all, social deficits are at the core of the autism diagnosis. The school should begin developing annual goals around social skills within the IEP. The goals should build upon one another and the child should not be expected to know what has not yet been taught.
Or perhaps this: The child who pushed the other did not intend to hurt anyone-- he responded based on immature emotional regulation and not with malice. The ability to regulate and manage emotions can fall behind in children with autism. These are skills that often have to be taught—they are learned rather than intuitive. Social-emotional development may lag behind by about one-third of the child’s biological age. Thus, the boy who knocked his peer to the ground was responding more like a four-year-old. A program to teach appropriate emotional response should have been put in place in advance of any issues and it wasn’t. That’s pretty stunning, when you remember that social differences are a hallmark of the diagnosis. The IEP can begin teaching social understanding by creating appropriate social goals and calling in trained professionals to make sure it’s done right.
In this case, the child who pushed may benefit from social goals that improve Theory of Mind; that is, that other people may have thoughts, feelings and experiences that are different from their own. All they may know right now is how they feel, and they feel everyone else just doesn’t understand: ‘My beautiful castle was destroyed and I’m in trouble! Not fair!” It is the job of the so-called professionals to assess the situation to see where the child’s understanding is lacking. This will help to develop appropriate next-steps for developing goals to improve social skills.
Or finally: The child who pushed the other to the ground did not intend to knock him down. He, too, is dysregulated in his proprioception; that is, his ability to apply the right amount of force is out of whack. He just intended to keep the boy away from his Lego castle, not shove him so hard he would fall.
What do we need to do here? We need a sensory assessment to see if we are right. We need to provide an appropriate sensory diet so this area of functioning can be improved over time…and we need to make sure we teach give him how to respond next time he is angry and frustrated.
Unfortunately, our province does not require educators to have special education training in order to teach our ASD children. As a result, responses to behavior may be based on those that work for typically-developing children-- situations involving incidents deemed to be aggression are not considered through an autism lens. The idea that it may not actually have been aggression at all would never occur to anyone.
A school’s initial response to the kind of scenario described might include reprimanding the child who pushed the other down, thereby humiliating a supremely sensitive child in front of his peers, or forcing him to admit wrong-doing in a debrief. Since children with ASD are frequently corrected in all settings, forcing them to admit they’ve done something wrong rarely goes over well. It can cause anxiety to escalate and erode trust in the staff. If a student with ASD doesn't trust or like his teacher, hold on tight. It won't be a banner year.
Children with ASD are also very black and white/ right and wrong thinkers. As such, staff response can be perceived as incredibly unjust: “Someone broke my Lego building! Why am I in trouble?"
This kind of response should be news to no one working with children on the spectrum. If we see this reaction from an autistic child, we know we have work to do.
Straight up: autistic students should NOT be reprimanded. What they need is understanding….and yes, they need to be taught appropriate social behaviours—but differently. It’s all in the approach. A very simplified example:
“It is very upsetting when someone breaks your building, isn’t it? Teacher is very sorry that she didn’t teach you what to do if that happens. If I don’t teach you, then you wouldn’t know what to do. Teacher is going to figure out how to teach you and then you will know what to do when you are angry or frustrated.”
Teachers or support staff should also, with their tone of voice and actions, communicate their affection for the child and make it clear that the child is not in trouble. This gentle approach can communicating several important things while maintaining the dignity of the children involved. It teaches the following important lessons:
• We cannot shove our friends to the ground
• When we are angry, there are appropriate responses
• You have not yet been taught those responses, and it is not your fault that you didn’t know them
• Once I teach you what you need to know, you will respond in those ways
It would be wonderful if our professionals could use this kind of calm and respectful approach. When they don’t, it can trigger even more challenging behaviors in the child who is then held fully responsible for his actions.
Parents, you see that for what it is: grownups who aren’t mature enough to look inward when things go wrong; grownups who believe the child used forethought and intention in order to make life difficult for others; grown-ups who aren’t acting like they are. Grown up, that is.
When this happens, you take the high road (though your inside voice is screaming, “Your incompetence is harming my child!) and you breathe. Slowly in. Slowly out. You calm yourself.
…and then, considerate of the professional’s dignity, you try to change their understanding of what happened in hopes of improving their response for next time. You connect the situation to the child’s autism and show that the ‘behaviour’ issue was, in fact, a lack of support and understanding issue.
…and when your meeting is over with that teacher, when issues are understood and supports in place, you might want to find a healthy way to release your stress.
If you choose basket weaving, I’ll save you seat!