Autism and functioning labels: Are they harmful?

Tee from Mount Zi

I want to take a minute to write about a touchy subject: autism and functioning labels.

What are 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. For instance, Charlie is considered low-functioning because he can’t do appropriate self-care for his age nor can he communicate beyond basic wants (for which he uses the Proloquo app on his iPad).

Many autistic people despise functioning labels. Why?

• Functioning labels can be hurtful. The main idea is that high-functioning autistics’ deficits are ignored and low-functioning autistics’ abilities are ignored.
• People may have higher expectations of high-functioning people just because they look typical and can do many things like their neurotypical peers. They fail to notice that many autistics just learn to conform to social norms by copying others’ behaviors. “Passing” like this can be very exhausting because it’s not in this person’s nature. It’s frustrating when people don’t realize that just because you look “normal” doesn’t mean you’re not struggling. That just because you’re mildly autistic, you just need to get your sh** together and act like a typical person.
• Conversely, people will hold a child like Charlie to lower standards because he’s low-functioning, and some worry that these expectations, though often realistic, are degrading.
• They give 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 perhaps it’s just due to how tired they are that day. An autistic person may be able to earn a high salary using a splinter skill but also may not be able to tie their shoes. Autistic people have different skills and struggles – they’re all different from each other, and they can change based on time, environment and mood as well.

Pulling on his shorts

But I do use and will keep using functioning labels. Just know that this is an unpopular opinion among autistic people, or at least a vocal minority. This is just my point of view. I’m just one autistic mother of an autistic child. I don’t speak for all of us.

I have a more balanced opinion of functioning labels. Here’s why:

I think functioning labels are functionally important. Because I’m an adult-diagnosed autistic raising a non-verbal child, I see both sides of the spectrum every day. There are big differences between people on the spectrum and these labels are useful to the public.

• Autism is very complex and broad, not using functioning labels make it even more complicated, especially to people who aren’t educated on the subject. Public perception of autism is not very diverse. It’s confusing to people that both Charlie and I have autism and I completely understand why. In certain contexts it’s really helpful to have adjectives like “mild”, or “severe”, or some kind of qualifier to help other people understand the depth of the condition for an individual.
• There is so little information online about severe autism, I feel like it’s important that people realize the difference. People with autism at any severity deal with the same basic issues, but a high-functioning person and a low-functioning person struggling with the same issue might appear totally different. And, people more severely affected by autism struggle not just more intensely but in more areas and more consistently too.
• There’s a reason why autism is rated by doctors in severity. People mildly affected by autistic traits will for the most part be able to live a life close to “normal”, while people severely affected have a low chance of living an independent life. There are three severity levels. Charlie being level 3 and the most severe. You can read more about it here in this article of mine. Level 1 Autistic people can be gently guided into appropriate social behavior. Charlie doesn’t even understand most instructions so at this point he cannot even learn. He doesn’t even know there’s something to learn. It’s not set in stone but that’s how it is now.
• Autism affects high-functioning autistic people’s daily life but for the most part they’re able to do things like other people. For instance, with help I’m able to form relationships and I’m able to do most daily things like other people. I’ve had and have friends. I don’t naturally know how to act in social situations but I’ve learned some things. It’s usually tiring but I CAN do it. For me making eye contact and small talk is difficult. For instance,  I become very tense when the cashier at the store starts a conversation with me. I usually end up stuttering or ignoring them. I’m not great at reading social cues, I don’t like social gatherings, I don’t like crowds, I don’t like noise, but if you show me and guide me, I may be able to do it. To pass. High-functioning autistic people can learn. For people on the other end of the spectrum, it would require substantial support and they’ll never pass typical folks, for whatever that’s worth.
• Another example: I’m aware flapping or rocking from front to back on a chair is weird so I’m able to stop myself from doing it most of the time. Charlie can’t help it so he does it throughout day. I’m not saying stimming is wrong. Some people on the spectrum don’t care about fitting in or acting typically and they won’t force themselves to stop awkward or strange seeming behaviors. I respect that decision but personally I want to fit in. It’s each person’s choice.
• Finally, with severe autism there’s the question of mental retardation and whether a low-functioning autistic person is having “high level” thoughts that are just trapped inside a brain that’s encrypted from the outside world, or whether that complex thinking isn’t really occurring at all. Another important distinction is that people like me with what used to be referred to as Asperger Syndrome do not have a cognitive impairment nor did we have a language delay as a child. In fact, I taught myself to read and write around age 3. It’s called Hyperlexia. Charlie on the other hand is now behind cognitively and still non-verbal at age 4.

I’m going to keep using functioning labels to not confuse people because it’s important for people to realize how broad the spectrum is. It can be said that people on the low end of the spectrum have more difficulties, less abilities, and their struggles are more intense, but perhaps the more self-aware nature 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.

Do I think people on the high-functioning side of the spectrum are being overlooked because their disabilities aren’t as obvious as someone who’s on the severe side of the spectrum? Yes, absolutely. I do because I live it. It’s sometimes hurtful when people say “you don’t look autistic” because they don’t know how much work goes into looking typical, and I’m not “fine”. They don’t realize how much effort goes into the simplest thing like driving, making eye contact or going to the store to buy a gallon of milk.

That said, autism does have different severity levels. I’m high-functioning. Charlie is low-functioning. I love my little boy with all my heart and I have high standards for him. I know what he’s capable of doing and he has my love and support everyday. I am so proud of him. Me calling my son low-functioning or severely autistic is just naming his condition like it is at this moment in time. Being low-functioning isn’t degrading and it doesn’t make me love my son less. I think he’s awesome, and most importantly he looks happy. You should see him flap his hand at the end of his favorite Curious George movie during the ending credits. These terms were invented by professionals in the medical field for a reason and I will keep using them.

Signed,
A high-functioning autistic mother of a low functioning, non-verbal, amazing boy.