An autistic adult perspective on functioning labels

This piece about functioning labels is an excerpt from my book, All Across the Spectrum, that you can order here.

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Autism and functioning labels

Functioning labels are used to give more information about the functioning level of people on the autism spectrum. The terms are broad and they take into consideration things like verbal and self-care abilities. However, some people believe that functioning labels can be hurtful. The main criticism is that when you create this division, the deficits of people considered high-functioning are ignored, and so are the abilities of people considered low-functioning.

What I think about functioning labels

The thing is though, there is a big difference between people on each end of the spectrum. I’m able to live a fully independent life (married, kids, job…). Whereas, my son, Charlie, who’s almost 9 can’t communicate beyond basic needs (with an iPad), and will most likely need 24/7 care for the rest of his life. Making no distinction between Charlie’s and my autism just creates confusion. I use functioning labels because I want people to understand how broad the spectrum is, and how different each autistic individual’s abilities and struggles are.

Charlie is level 3 autistic, which is the most severe. Level 1 autistic people, like me, can be gently guided into appropriate social behavior and communication. Charlie doesn’t even know there’s something to learn, so at this point in time, he can’t learn. For instance, I can communicate. I’m able to form relationships. I don’t naturally know how to act in social situations but I’ve learned how. It’s tiring, but I can do it. I don’t like big social gatherings and crowds, I don’t tolerate noise very well. But if I have help, I can rise to the occasion. To “pass”.

High-functioning autistic people can learn. And even though sometimes despite my best effort, I can’t pass, I remind myself that people on the other end of the spectrum, like Charlie, would most likely never pass as typical, no matter how hard they try.

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The flip side of functioning labels

I do understand why in some cases, functioning labels may be confusing. They give the general public the impression that one autistic person will function on that same level every day and in every situation. In reality, an autistic person may be able to pass as neurotypical in certain situations and have a complete meltdown in another. Or they may be able to earn a high salary using a “splinter skill” but also may not be able to tie their shoes. We are all different from each other, and our ability to pass may change based on time, environment and mood.

It can be said that people on the low end of the spectrum have more difficulties, fewer abilities, and greater struggles. But perhaps the self-awareness of higher functioning people can lead to them having greater subjective difficulty with their struggles, even though from the outside it might seem like those struggles are much less severe. Additionally, people on the high-functioning side of the spectrum can feel misunderstood because their disabilities aren’t as obvious as someone who’s on the severe side of the spectrum.

That said, as an adult-diagnosed autistic raising a nonverbal child, I see both sides of the spectrum every day and find functioning labels important. Even on my worst day, I will never struggle as much as Charlie on a good day. Functioning labels help people better understand how two people with very different abilities and struggles can both be autistic.

This is an excerpt from my book, All Across the Spectrum, that you can order here.

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