The Problem with Autism Labels

“Your son’s test results are consistent with a classic autism diagnosis.”

I stared at the psychologist and waited for her to continue. But she didn’t.

“Is it PDD-NOS? Or Asperger’s?” I asked.

“No,” she continued. “In order to be diagnosed with Asperger’s syndrome, he can’t have a language delay, which he clearly has. And he has enough symptoms that fall into the classic autism category of the spectrum.”

My husband and I stared at her and waited a few moments. When she didn’t say anything, I said, “Well is he at least high functioning, or something similar?”

“Actually the term high functioning isn’t a diagnostic label,” she explained. His official diagnosis is classic autism. His IQ test revealed average and above average results, which is consistent with what many people refer to as high functioning, but again, his actual diagnosis is classic autism.”

I had been expecting an autism diagnosis. Therapists had pointed out warning signs when he was 18 months old. His 3-month premature birth put him in the spotlight for a fleet of early interventions from the moment he was born. After he was finally allowed to come home from the hospital at 6 months old, speech therapists, physical therapists, and occupational therapists, along with a team of medical specialists followed up on his development both in clinics and in our home. Right before he turned 2, his fascination with letters and numbers led to his therapists’ concerns about hyperlexia, a symptom of autism.

There were other warning signs as he grew. He learned to read at the exceptionally early age of 2 and a half, but couldn’t converse in full sentences until a couple years later; he had fleeting eye contact; and he preferred to sit alone and study maps or toy numbers for long periods of time rather than engage his father or me. Nevertheless, he did interact with us, and he could be pulled out of his intense fascinations. He didn’t look like the stereotypical autistic child to us, so my mind immediately began separating his label from the others who shared the official diagnosis of classic autism.

So whenever people asked me about his diagnosis, I tended to add high functioning somewhere in the description. Sometimes I included it on my own and other times I used it when someone else pushed the discussion with something like, “He doesn’t look autistic.” While I understood that the term high functioning was not a diagnostic label, I couldn’t help but fall into the routine of using it to describe him as someone with awkward social tendencies, but who lacked any stereotypical autistic behaviors like rocking, hand flapping, or a tendency to flee that might immediately call attention to him.

But today I avoid using the term. What instigated this change? Through interviews with autistic people and my own research, I have learned about the dangers of using this label. Let’s first explore what most people mean when they use the term high functioning. Although “high-functioning autism” is not an official diagnostic label, the mainstream public often uses this term to describe individuals on the spectrum with average or above average intelligences. But the name has adopted additional connotations that mistakenly groups autistic individuals into a category that assumes they can do everything a neurotypical can with the exception of being a little awkward in social settings.

Most people use this term to mean that the autistic person can function well in a neurotypical environment. But what does it mean to function well? Some people believe individuals on the spectrum are functioning well if their autistic traits or symptoms are not easily visible to neurotypical people. This might describe an individual who can communicate effectively verbally and who doesn’t have frequent tantrums in public, or exhibit any unusual behaviors (i.e. hand flapping, rocking, physical ticks, loud humming, obvious intense perseverations).

So what’s wrong the term high functioning? A label of high functioning isn’t as descriptive as many people think it is. High functioning cannot possibly refer to all of the tasks humans perform on a daily basis. Some autistic people are high functioning when it comes to one skill (in other words, they can perform it well by the standards of a mainstream society), but then low functioning when asked to perform a different task. This is true of every person whether or not they are on the spectrum. Everyone is high and low functioning. Sometimes autistic people can act high functioning one day in a specific environment, but then fail to perform at this level when outside of the home or in a setting with uncomfortable sensory triggers. On the other hand, autistic people who are identified as low functioning can have high functioning skills as well. These terms suggest a false sense of identification and don’t do justice to the unique skill sets of people all over the spectrum. The overly simplistic labels of high functioning and low functioning inaccurately divide autistic people.

Another problem with this separation of autistic people is that these generalized categories impact society’s expectations of each group. Some people will assume that high-functioning autism isn’t really disabling and even that the label comes with the advantage of possessing a special talent or superior intelligence.

Jim Sinclair, an autistic writer, speaker and disability rights advocate, discussed his experience with the assumptions of those around him in his personal essay “Bridging the Gaps: An Inside-Out View of Autism (Or, Do You Know What I Don’t Know?)” (2013). He explains what he believes are the most damaging and painful assumptions: “that I understand what is expected of me, that I know how to do it, and that I fail to perform as expected out of deliberate spite or unconscious hostility” (Schopler & Mesibov, 2013, p. 296).

These assumptions fail to acknowledge the individual’s full neurological condition, which still results in a multitude of obstacles to daily functioning. Psychologist Dr. Barry M. Prizant has seen this in his work with autistic children. In Uniquely Human (2015), he says, “Even when a child is described as ‘high-functioning,’ parents often point out that he continues to experience major challenges that educators and others too often minimize or ignore” (Prizant, 2015, p. 221). A label of low functioning might mean that people have low expectations, and a label of high functioning could give the false notion that everything is fine.

Not all labels are bad; I believe a label of autism signals a variety of potential strengths and weaknesses, and this identification can help society support people on the spectrum to reach their full potentials. However, I resist the temptation to further categorize my son’s autism. Beyond the label of autism, he is an individual. I hope that his peers, his school, and his future workplace will welcome and assess him as an individual and not a subcategory of the spectrum.

 


 

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1 Comments

  1. Reply

    Why accept even the label “autistic”? It is merely a clustering of traits under a title that has proved useful to a professional guild. It has no “objective” reality, other than being the word you look up on Google to find treatment and coping resources which that professional guild supplies.

    Is that cluster of traits a sufficient commonality to adopt as a political group, a “minority” which demands safeguards and other resources different from those provided non-“minorities”?

    IMO, it makes more sense to create political action action groups from people with traits which, however dissimilar, demand the same “special” treatment from society (leaving for the moment the question whether a group deserves “special” treatment in order to enhance/maximize their contributions to society (the efficiency argument) or because social justice requires providing a level playing field to all citizens (the moral argument)). Such a group could then focus on legislation mandating what they need to flourish in this society, instead of what individual condition engenders that need.

    FREX, if what is needed is additional protection from bullying, then you’ll be able to enlist a much larger population of people with “minority” traits to join together to lobby for self-defense classes (teaching verbal and social as well as physical tactics) for targets of bullies.

    Or maybe it just makes me smile to think of a bunch of differently neurodiverse high school outcasts banding together to protect each other, as occurs a few times in my semi-comic coming of age novel, “No Child Left Behind.” 🙂

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