I have a bone to pick with the terms "high functioning" and "low functioning" for kids on the spectrum.
"Functioning" means working, operating, or having a purpose. And sure, it's easy to see how a machine could be labeled as working or not, but when it comes to a child with autism, like my dear son Liam, a non-speaking 7-year-old on the spectrum, what do we mean? Many adults spend years trying to find their purpose, so is it fair to claim we know the purpose of a child with autism and therefore we're able to assess if he or she is functioning or not?
I don't think so. It seems to me that a child's purpose in this world is evolving, and it's something they each grow into with time. But when we designate a child's functioning level as high or low, we're assuming that his or her purpose or ability to move through the world is already set in stone. This mindset is dangerous, and it causes more harm than good. Here's why:
The criteria that surround these labels do not describe a person.
My son's official diagnosis is "severe" autism, and I've heard him described as "low functioning" by many professionals. But this is simply not an accurate description. Even when I look up the criteria for such a label, I don't see Liam. He's very aware of the world around him, he's able to learn, he wants to engage socially, and his challenging behaviors don't exist in a vacuum, but rather they reflect his struggles with communication.
The labels don't speak to the specific challenges of each child, and these specifics are what we should focus on.
Just saying "low" or "high" functioning relies on generic descriptions of traits—it doesn't look at the specific challenges each child faces. I think it's more helpful to say, "This is what my child's good at, this is what he/she needs help with."
These labels can undermine the hard work that many people on the spectrum put in each day.
If a child is labeled high functioning, their challenges are often dismissed. While not all kids on the spectrum flap their arms, spin, or stim, many of them struggle with anxiety, socialization, and expressing themselves. We should acknowledge these struggles as well, and seek to a help a child work through them.
"Low" and "high" functioning labels determine autism services—and they can be manipulated accordingly.
Recently, two of my friends' children received autism diagnoses. One of the children is verbal, and he got placed somewhere in the middle of the spectrum, although he still needs quite a lot of therapy. His label doesn't reflect his challenges, but it does mean that his parents don't qualify for government-funded services like the Autism Waiver, a program which covers therapy for kids on the spectrum only if they are "autistic enough."
Another friend, whose son is a happy, non-speaking 3-year-old, was told by his therapists to exaggerate his challenges in order to make sure he qualified for all the services he could receive. This sort of random assignment of labels means that a lot of kids fall through the cracks and don't end up getting the help they need.
The labels "low" and "high" functioning reinforce the (false) notion that having a child with autism is awful, which just perpetuates the fear and despair surrounding the disorder.
Too often I've seen parents and autism advocacy groups demonize having a low-functioning child with autism. These groups paint a grim picture of what life with this child is like, and there seems to be a tacit belief that if you have a child who's high functioning, you dodged a bullet somehow. My son has many challenges, yes, and I know his life is hard sometimes as he struggles to communicate, but I adore him. I love helping him grow and learn, and his different neurology makes him unique, not a cause for fear and despair.
These labels presume there's a normal that our kids with autism have to get to and that being indistinguishable from their peers is the goal of their lives.
I don't think that helping our children blend in or just seem normal is our purpose (or function, if you will) as parents. Thinking of our children in specifics, as humans, and helping them be one their own best selves should be.
My son's functioning just fine, and he's developing at his own pace. He's human functioning. He's Liam functioning. Or how about he's just human? He's just Liam? That sounds like the perfect label to me.