Resisting Labels

When someone asks where my child falls on the spectrum, I respond “somewhere in the middle.” 

When you tell someone you have a child with autism, it’s likely the first question they ask will be, “Is he high or low functioning?”

I cringe whenever I’m asked that question. In my advocacy work, I speak with many families whose children have very significant challenges, and they are hanging by a thread. I also speak to some who are thrilled with their children’s progress. As part of that vast group “in the middle,” we are like many families who have good days and bad. Hope outweighs despair, but the level of effort doesn’t diminish by much.

It’s a dangerous game to divide children into opposite, distinct categories based entirely on our flawed perceptions of what they seem to know. Attitudes, and (more importantly) expectations about your child are formed on the basis of your response. So I try to answer this question very carefully. The terms “high” and “low” functioning do not have specific skill sets attached, and so they are, at best, very imprecise ways to describe a child. There are no diagnostic criteria to describe a high- or low-functioning person. More importantly, these descriptors are entirely based on a model of deficiency.

As human beings, we like to categorize things (including other human beings) into neat compartments to make better sense of our world. I believe that when people ask this question, they are genuinely trying to discern what autism means in my life by understanding how affected my son might be. They have no idea how complex the disorder is. They don’t realize that people with extremely high intellect and excellent verbal skills might be relegated to their parents’ living room couches their entire lives because they don’t have the social skills and emotional regulation to deal in dynamic environments. Likewise, they don’t understand that a child who is non-verbal and engages in stimming behaviors that look odd to the rest of us might be able to find employment and live independently because they can deal with the constantly changing realities of life.

Uniquely Andrew

Describing my son is almost impossible even if I’m talking to a veteran autism parent. Andrew is 11 years old and has a diagnosis of autistic disorder, which technically is on the “low” end of the spectrum. Most people don’t know what autistic disorder means, and in any case, describing him that way would be grossly misleading. Andrew has a huge vocabulary which he uses functionally. He loves to be in the thick of things (people and all), enjoys rock music, wants to see the latest popular kids’ films, and is dreaming of owning a Nissan Leaf. He’s anxious to get his driver’s license (as his oldest brother just did) and asks me what he should name his children when he gets married. He’s discovered girls and has a serious crush on one of my closest friend’s daughters.

In many ways, Andrew seems very intuitive. Recently, we were talking to my older son about a teenage girl, formerly our neighbor, and how beautiful she had become. “Michael, you should ask her to go on a date with you,” Andrew encouraged his brother. “She has a boyfriend,” my older son replied. “Then, you have to convince her to go out with you,” he wisely advised.

If you’re talking about a typical 11-year-old boy, that doesn’t seem at all remarkable. However, for a boy with autism, whom some say should be clueless about relationships and how they work, this is a big deal. He understands that the rules of the game are to woo the girl away from someone else, and that this takes some doing (or convincing) on your part.

But Andrew has many challenges that will likely make his life very difficult. He gets stuck on topics, particularly silly topics that, while charming, certainly impede his learning. For instance, he’s currently obsessed with a neighbor’s cat that often wanders into our yard. Andrew christened the visiting feline “Carlos” for unknown reasons, and constantly asks questions about “Carlos the Cat.” Does Carlos like to ride in the back of trucks? What would Carlos do if we took him for a ride in a Mustang convertible? Does Carlos chase dogs? This is confusing to people who aren’t aware Carlos is a cat. It’s also frustrating for teachers trying to get him to learn math facts.

Ready For The World?

In many ways, Andrew seems like a person who would have difficulty functioning “out in the world.” He has some unusual stims (choreiform movements with his hands). His speech isn’t fluent and his voice has an atypical quality, making him hard to understand. He needs extra time to gather his thoughts and retrieve the words he needs to express them. Perhaps most difficult, he has very low frustration tolerance. Because of this, we don’t always get to stay for the entire basketball game or choir concert in which his brothers participate.

Each year, we expand Andrew’s ability to cope out in the world, though puberty has set us back just a bit. There was a time when a choir concert would have been out of the question, so my husband and I would tag team, one staying with Andrew, one missing these everyday events our older sons enjoy. We are at the stage now where we normally bring him everywhere, usually getting through without incident, save the rude stares from people who don’t understand. If he becomes too disruptive, one of us leaves with him. This rarely happens.

Andrew has a wonderful sense of humor, but it’s a double-edged sword. While his antics make him happy, they can be frustrating when the subject at hand is math or reading comprehension. He can’t seem to inhibit the random silliness when he needs to. Compound this with extreme issues with focus and intermittent engagement, and you’ve got a kid who has the cognitive ability to comprehend many things, but a kid who really struggles with producing output that shows us what he knows.

Endless Questions

In the big picture, the question of how many people with autism are “high” or “low” functioning has many important implications. It seems for now the most affected children will likely need significant lifelong supports. They might also have more serious underlying medical conditions that require intervention, though research into these issues is tragically lacking.

Even the question of causation comes into playif environmental triggers are playing a role, and if there is a dose-response relationship, are children with higher exposures more likely to be “low-functioning”? Is a 12-year-old with autism more likely to be diagnosed with autistic disorder, and a five-year-old more likely to be diagnosed with Asperger’s Syndrome? Could it be that raw numbers are going up, but severity going down?

Some adult self-advocates with autism tell us they don’t want or need help, and actively fight against efforts aimed at our younger, “low-functioning” population. Do we need to create a category of people who don’t want our help, and tell them they shouldn’t speak for those who do? This is no small problem, and not just an issue of semantics.

Not surprisingly, good data on how significantly the autism population is affected is virtually non-existent. There are so many things we should by now know about autism (but don’t) that it’s hard to imagine our government is even trying.

As for Andrew, we continue to struggle with how to balance his “high-functioning” attributes with his “low-functioning” challenges to help him reach his full potential. Every year, and indeed every day, we reevaluate school placement, biomedical interventions, therapies and, really, every aspect of his life to see if we are doing the best we can do for this complex little guy.

For now, when people ask me where he is on the spectrum, I just reply, “He’s somewhere in the middle.” At the end of the day, he is neither “high” nor “low” functioning. He’s Andrew.

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