It’s All Just Autism

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This is the spectrum people may picture as a metaphor for autism.

You’ve heard that autism is a spectrum disorder. And by that, you probably pictured it in the way a spectrum of light is often displayed, much like that image to the right. It’s linear, with levels of severity that range from one end (high-functioning) to the other (low-functioning), and it has infinite points in between that all qualify as an autism diagnosis. The objective in this metaphor is to convey that there is a vast array of symptoms that the autism spectrum can exhibit, but they all exist somewhere along a defined trajectory leading from better to worse.

This kind of thinking is incorrect, and I’d like to stop using it. 

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This is what an autism spectrum should look like.

The autism spectrum is not a bar or a line; it’s circular, like that image to the left. It still shows infinite variety, but there is no higher or lower point, no suggestion of less or more, no beginning or ending.

Why does this matter? Because there isn’t really any high- or low-functioning autism (you can read more about that here.)  I believe that using the terms high- or low-functioning is damaging to the community because it conveys assumptions about abilities and inabilities.

Simply stated: “high functioning” disregards the very real challenges an autistic person faces daily. “Low functioning” diminishes the value of that person’s skills and sets low expectations for their achievement.

I’ve noticed that some parents are quick to say their child is “high functioning.” It sounds to me as if they are saying that while their child may be autistic, it’s only “high-functioning” and therefore not like other cases. On the other hand, I have personally heard very few parents describe their kids as “low functioning.” My theory is that while there are definitely more severe cases of autism than others, these latter parents realize the pejorative nature of the term low. And if there shouldn’t be a low, there can’t be a high.

Conversely, I have heard many parents comfortably say “severe autism” but few that say “mild autism.” There is nothing about autism that feels mild, no matter where your child is on the spectrum. That disparity alone should demonstrate why we need to stop using the terms high and low. The difference lies in the use of words that can be viewed as flattering (high) vs. disparaging (low). Our goal is to describe our child, not place him or her on a scale of valuation.

To those that will say the terms high- and low-functioning do help the world to understand a specific case of autism better, I simply have to disagree. Additionally descriptive terminology is helpful only when it adds necessary or clarifying information to the discussion. For example, if I tell a waiter I want to order a steak, it’s both helpful and clarifying for me to offer that I want it cooked medium. That information carries with it a defined and common understanding. But saying high- or low-functioning doesn’t have a diagnostic criteria and therefore carries a different interpretation to anyone who uses it. It’s the equivalent of me telling that waiter I want the steak the way they make it in September. What does that mean? Exactly.

I understand that it’s hard to describe the nuances and complexities of autism, and so we prefer shortcut terms in casual conversation. But taking those shortcuts detract us from the objective of helping people outside the autism community to better understand those of us within it.

The unique neurology of an autistic person can’t be reduced to a two-word label. Certainly the intent behind using the term “spectrum” is specifically for that reason. It’s all autism. Let’s work on helping the world accurately understand what that means, rather than drawing lines in between it and taking up residence on our own side.

 

 

Frequently Unasked Questions

Occasionally I get a question about Cheeks that is asked delicately, as if it needs to be approached with extreme care. I understand the impulse, but in my case it’s unnecessary to hesitate. It also occurs to me that questions are like pests. For each one I hear, there are likely many more that I don’t. For that reason, I’m going to use this space to publicly answer those sometimes-tentative questions. I’m calling it my Frequently Unasked Questions (I was tempted to use the acronym as is done with FAQs, but decided against it).

Today’s question: “What is Cheeks’ level of functioning?”

I think this question gets asked because people are seeking an easy way to summarize Cheeks in terms they can understand. However, as is the case with most labels, it doesn’t capture nuances. I usually answer by saying he’s moderately functioning. I do that because it’s like calling someone middle-class, it allows for a lot of unstated interpretation. It’s concise, but it doesn’t really answer anything.

The whole answer is, in some diagnostic criteria he measures on the low end, in others he measures on the high end. In order to answer the question fully I would have to break his individuality down into symptoms, which I won’t do.

A little background on the diagnostic criteria of autism: When Cheeks was diagnosed, it was under the terms of the DSM-IV. That’s a manual published by the American Psychiatric Association which classifies mental health disorders. That publication included a variety of named diagnoses within the autism spectrum, such as Asperger syndrome or PDD-NOS. It was superseded in May 2013 by the DSM-5, which is currently in use. The DSM-5 eliminated the varied labels in the spectrum, referring instead to anyone meeting the diagnostic criteria as simply having autism, and then separating by degrees of severity. That means there isn’t anything called Asperger’s anymore (although many within the community still prefer to identify with the word).

This is relevant information because historically, the term “Asperger’s” was used interchangeably with the term “high functioning autism” (HFA). HFA was never a diagnosis, it was a colloquial term that meant Asperger’s. The main difference between HFA/Asperger’s and other forms of autism was speech skills. It didn’t address any other symptom. Someone with Asperger’s could still have other, more severe symptoms than someone who was described as lower functioning on the spectrum.

quotescover-JPG-97There are several symptoms commonly seen with autism, but not all of them are present in every individual. They may include a lack of understanding of social cues and nonverbal communication, stereotypical behaviors (think obsessive and repetitive), speech impairment, hypo- or hyper-reactivity to sensory stimuli, inflexibility about routines or rules, etc. That’s not all of them, just some examples.

Cheeks does speak, but with significant impairment. He’s very empathetic, but social cues are hit-or-miss. He doesn’t really have repetitive behaviors, but he does develop focused obsessions. His self-injury and tantrums can be severe. He makes great eye contact and he’s affectionate. I could go on, but you see the disparity I’m demonstrating.

I also have to consider the message that labels like low and high functioning send. If I call Cheeks high functioning, I’m disregarding the very real and significant difficulties he has. And if I call him low functioning, I’m disregarding his current and constantly developing skills.

There’s no quick yet descriptive way to label anyone on the autism spectrum. In fact, there’s a growing resistance within the autism community about whether to use labeling terms at all. If you’d like to know more about that, you can read a good explanation here.

What I am most mindful of is that these are real, multi-faceted people, and we’re trying to use one term to describe all of their skills and deficits. That sounds like the results of a Facebook quiz, not a genuine and appreciative way to discuss a person. It’s better just to say to me, “tell me about Cheeks”. I promise not to spend hours on the answer, as much as I’d like to. And in return, I’d love to hear about someone you love, too.

[If you have a question about autism you’d like me to answer here, please use the “Contact Me” link on the top menu.]