Functioning labels are harmful.

amother

Wed, May 03 2023, 4:07 pm

Autistic adults agree on this for the most part, including those who are not considered high functioning (despite the stereotype that only Level 1 autistics have opinions). Autistic children will become autistic adults, so the opinions of autistic adults should be taken into account when it comes to the language we use for children.

Here are three of the reasons they're harmful:

Functioning labels take the focus off an individual's needs. While someone's level of support needs can be related to their "functioning" level, they're not the same thing, and this is complicated by the degree to which the person's needs were met when they were first diagnosed. Reliance on functioning labels often leads to "high functioning" people's needs not being met, which can lead to burnout, or to people with high support needs being assumed to be incapable of things they can do with the right support.
Functioning labels are an arbitrary and meaningless oversimplication that offers no useful information and is used to generalize. They imply that "high functioning" and "low functioning" are two distinct types of autism that should be treated differently based on the label alone. Each autistic individual is different, and person A may appear to be "high functioning" and have more in common with person B who's "low functioning" than with person C who's "high functioning." It's a spectrum, not a line.
Functioning labels are stigmatizing and feed into stereotypes. "Low functioning" is used to write someone off completely. "High functioning" is often used to imply that someone is less autistic or that their autism doesn't matter. It also leads to shame and confusion about autistic burnout reducing someone's ability to function.

amother

Electricblue

Thu, May 04 2023, 6:56 pm

I have heard this and so I am surprised by all the people on this site claiming their child/spouse, etc are 'high functioning'. Asperger's is even worse since it isnt even a diagnosis...

Maybe it helps them come to terms with the diagnosis if they have a hard time with it? Either way, it is very hurtful for people who are actually autistic.

seeker

Thu, May 04 2023, 8:06 pm

I hear, understand, and validate these issues with the "functioning" labels. But I wish that while pointing out the problems, people with insight could also suggest other ways of communicating that would be more helpful. Especially since functioning is something that can be described observationally, whereas all the layers of possible needs can be dodgier to assess especially if the person you're talking about is unable to communicate.

For example, as a special ed teacher if someone tells me I have an incoming student who is high functioning autistic, I infer that what they mean to say is that I can expect this child to be more or less able to participate in classroom functions even though they also will likely have difficulties and require accommodations that are common in autistic folk. I take it to mean that they have some way of communicating in a form that I can comprehend, that they will probably be able to comprehend much of what I need to communicate, and that their self-care abilities such as feeding and toileting are within the range expected for their age. Other than the admittedly problematic "high functioning," can you offer another efficient way to communicate all this without having to spell out every detail each time? Because we need to spend an additional chunk of time discussing this child's more specific needs and accommodations so it would be nice to get a snapshot of their functioning down pat.

amother

Hunter

Thu, May 04 2023, 8:14 pm

I was diagnosed as autistic. But my challenges are very different from those who have the more traditional type of autism. When I need to disclose my diagnosis I tend to explain that I have the Asperger’s type of autism. Otherwise people get confused.

The “actually autistic” movement is strange. It has a lot of similarly to the trans movement. I’d rather it didn’t spill over into our frum communities.