If having Autism didn’t make it hard enough for people on the spectrum, being judged, mis-understood and invalidated makes the impact of the condition even harder. This is especially true when the source of the judgement is a professional.
Because people with Autism (a/k/a ASD) don’t usually display visible or easily recognizable handicaps like someone in a wheelchair, people with ASD are often viewed without recognition of or regard for their legitimate difficulties.
Unfortunately, it’s not just the uneducated who are at risk for not recognizing the impact of the disorder. Those who overlook the meaning and validity of the diagnosis range in profession from teachers and educators, to doctors, lawyers, corporate employers and a myriad of other types of professionals who come in contact with individuals on the autism spectrum through their work.
In our social world, there is an unconscious and unwritten set of expectations that we adhere to, and we expect others to do the same.
But people on the autism spectrum usually struggle to understand those expectations (if they are even aware of these unspoken rules at all).
Their lack of compliance with these expectations is not a conscious decision, not a sign of bad character, and certainly not the result of bad parenting.
Rather, their non-conformity is a result of the social disability (diff-ability?) that is characteristic of autism.
Sans the outward signs of ASD, even people who are aware of the diagnosis often believe it is not a legitimate explanation for their choices and behavior. Thoughts like “…he’s smart, he can figure this out…” or “… she could do this if she wanted to…” become the battle cry of the uninformed.
“Many people believe the notion that those on the spectrum “ought” to try harder, “ought” to conform more, “ought” to understand the social norms, and “ought” to behave like everyone else. They turn autism into “ought-ism” and deliver tough love and disapproval when those on the spectrum are unable to live within social norms, or don’t perform to popular expectations.”
When that happens, people see the lack of compliance as an intentional decision, and launch into “ought-ism”, thinking things like they “…ought to try harder,” “ought to comply,” “ought to be able to accomplish some task,” “ought to be like everyone else.”
The Excuse Myth!
The Excuse Myth gives birth to Ought-ism. One of my most successful friends, a very intelligent, worldly man and an accomplished trial attorney, quipped that “everyone has autism these days.” He recounted that he had encountered an individual in his work that was diagnosed with ASD, and who was citing the autism as part of the reason to legitimize and explain certain behaviors that were the alleged grounds for a law suit he was litigating.
Our ensuing conversation brought to light the fact that he, like many others, does not understand autism, and has absolutely no idea how it influences behavior!
Many professionals do not recognize the unique world view and thinking that is part of autism, so they question the validity of using the condition as justification for behavior.
They struggle with what I call the “Excuse Myth.”
Believers in the excuse myth are of the opinion that autism is being used as an excuse not to do the hard work of conforming, fitting in, and following the rules.
“We need to replace it [the Excuse Myth] with the understanding that autism is real and legitimately influences behavior.”
It is a certain type of prejudice that is fueled by the lack of obvious outward handicaps, combined with their own ignorance about autism and the intelligence that is apparent in many of people with an ASD diagnosis. This prejudice harbors the belief that people on the spectrum could handle life just like everyone else if they just tried hard enough; if they do not try hard enough, they are lazy and they are using the autism as an excuse not to make the effort.
The ancillary belief to the Excuse Myth is that tough love, holding them rigidly to an unwavering standard, is the cure. Harsh. That’s like blaming a diabetic for not trying hard enough to make their body process sugar like everyone else and forcing them to consume the sugar anyway!
Eradicating the Excuse Myth is not enough! We need to replace it with the understanding that autism is real and legitimately influences behavior.
But not just among those already familiar with ASD.
Autism understanding is an important issue we need to make more visible in the general public before we can make real progress in embracing the autistic community in our culture, and helping individuals on the spectrum be successful.
Do Your Research
The question of the validity of the ASD diagnosis has even made its way into pop culture.
In the 2007 movie P.S. I Love You, Harry Connick, Jr.’s character, who has high-functioning autism, jokes that rudeness is now a “disease” and you can take a pill for it. That may be funny, but it also wrongly minimizes and creates doubt about the legitimate issues of those with ASD.
That’s not helpful. What’s worse is that it is damaging to those with ASD.
The injustice of ought-ism, the inaccuracy of the Excuse Myth, and the application of tough love is most painfully experienced by parents of children on the spectrum, who consistently report that this thinking is present (and all too common) among teachers and administrators in schools, both public and private, and at all age levels.
The teachers and administrators who are responsible for working closely with children on the autism spectrum on a daily basis, assessing their programming needs, and making decisions about their education need to educate themselves!
Sometimes their lack of understanding is appalling as well as detrimental to the child.
“That’s why it is so important to focus on teaching individuals with ASD functional skills that will support them in successfully navigating the social terrain in their lives.”
This is especially true in the areas where the autistic person’s lack of social understanding causes an inability to fit in and be “nice,” to perform to standard social expectations, or to avoid bullying.
For example, my 24-year old son recently recounted to me what he considers his absolute worst experience in grammar school. It was winter time, and his 4th grade class had planned a class outing to go tobogganing. My son always struggled socially. He didn’t get invited to birthday parties, had very few friends and very limited interactions with his peers, so we were thrilled that he wanted to join in the fun with the other children and go on the outing. Finally, he would get some good social experience! Finally, he would be included!
Unfortunately, during recess the morning of the excursion, some kids bullied him into sticking his tongue to a metal pole ala Flick and Ralphie and the movie “A Christmas Story.” Instead of punishing the perpetrators, my son, who truly was the victim, was left behind in the school office when the class went on its outing in punishment for the incident.
Here’s a kid with a social disability that is being punished because he couldn’t accurately read the intentions of his classmates. It was a major setback for him. I hear this type of story from parents all the time.
I certainly recognize that people with ASD must abide by the laws, and can’t be given carte blanche to do whatever they like because they are on the autism spectrum. That’s why it is so important to focus on teaching individuals with ASD functional skills that will support them in successfully navigating the social terrain in their lives.
We need to teach our children as much as possible about living life successfully, but by the same token, it would be helpful if the world around our kids could understand that they may have different, and legitimate needs.
Once the general public understands and believes that autism is real, and that it influences behavior, we can begin to make appropriate accommodations balanced by realistic expectations of someone on the spectrum.