Functioning labels

butterflyinthewell:

iwaxallmysplines:

One thing I’ve noticed with regards to functioning labels is that there’s a huge disconnect between the way they’re used by autistic people (mainly in the context of protesting their use) and the way they’re actually used in diagnoses.

On tumblr, I’ve seen two ways of talking about them. One was by a (low-functioning – she identifies that way and prefers that label) person who believes they are good and useful and is really annoyed by the way that other autistic people keep trying to eradicate their use. If I recall correctly, her argument was that labeling herself as “low-functioning autistic” gives people a quick baseline idea of her abilities and disabilities without her having to go into detail about her medical history and whatnot. This is also – and I believe this is relevant – a person who has frequently voiced distress about the fact that autism activism is overwhelmingly dominated by aspies and high-functioning autistics, leaving low-functioning autistics ignored and further marginalized.

On the other hand, the dominant narrative on tumblr is that functioning labels are both useless and bad. They divide autistic people into “inhuman” and “almost human”, denying the abilities of “low-functioning” autistics and the disabilities of “high-functioning” autistics, thereby increasing stigma and decreasing accommodations for both groups.

The people who hold this view often set up a thing where they compare two people – one whose autism severely disables them, and one whose life is full of successes – and then have a shock reveal where both people are, in fact, different aspects of the same person: themselves. They say that a diagnosis of “high-functioning” or “low-functioning” largely depends on what aspects of a person’s life are looked at and/or how they’re feeling in general on the day of diagnosis. In essence, they describe “low-functioning” as an (inaccurate) label of “more autistic” and “high-functioning” as an (inaccurate) label of “less autistic”, and protest against this on the basis that all autistic people are equally autistic: they may have different symptoms, but the autism itself isn’t on a slider.

Here’s the thing, though: in the process of self-diagnosing I read through the entire German Wikipedia page on autism, including the diagnostic criteria, and Germany still uses the ICD-10 – under which autism is still split up into Asperger’s, High-Functioning Autism, Low-Functioning Autism, and PDD-NOS. (This will hopefully change later this year: the ICD-11 should come out sometime soon and under it ASD will be combined into a single diagnosis.)

And the actual diagnostic criteria of high- vs. low-functioning autism have literally nothing to do with “how autistic” you are, or how much your autism disables you, or whether you are able to have successes in life.

According to the ICD-10, the only actual difference between high-functioning autism and low-functioning autism is your IQ. If you have an IQ of under 70, you’re low-functioning. If you have an IQ of 70 or over, you’re high-functioning.

“Low-Functioning Autism”, according to the actual diagnostic criteria, is literally just a shorthand for “you have both autism and an intellectual disability, and because we haven’t updated the ICD yet we’re combining this into a single diagnosis instead of giving you two separate diagnoses for these two things.”

Now, I’m not sure if the DSM (before combining ASD into one thing) had the same diagnostic criteria, and under the DSM-5 all autisms are equal anyway, so it’s not a term that should still be in clinical use in DSM-using countries anyway. And the points about stigma and accommodations might still stand (though as to that, please, listen to the perspectives of low-functioning people as well before condemning the labels – I’m not saying you’re necessarily wrong, but listen before you preach and make sure your activism includes everyone autistic). But saying it’s useless? If your proof for how meaningless functioning labels really are depends on a definition of “high-functioning” vs. “low-functioning” that has nothing at all to do with the actual definitions used in diagnostic criteria, that proof is useless. All I’m really getting from this debate is “the people who disagree with functioning labels don’t actually know what they mean”.

(Just for the record, I’m neither for nor against functioning labels at this point. I’m still learning, and between the changing diagnostic criteria and my higher-than-70 IQ I’m unlikely to be personally affected by the labels anyway. I just want to point out the flaws in the argument. One thing’s for sure, though: in this particular debate, I’m strongly inclined to take my cues from autistic people who also have an intellectual disability.)

I won’t side eye an autistic person calling themselves low functioning as much as I do when I hear someone say high functioning. There’s a reason for that– some autistic people say “I’m high functioning, I’m not like those people who can’t talk and act like babies.”

You said yourself that those labels get misused, and they do. Medical terminology for conditions that carry a social stigma can become stigmatizing. 

Neurotypicals use functioning labels to talk about how much an autistic person’s autism affects them. And, honestly, they use “low functioning” and “severe” in very negative ways. Parents throw them out to dismiss autistic people who communicate understandably in any way as “so high functioning that they don’t know ‘real’ autism” and they’re also used to speak over and humiliate autistic children who need a lot of assistance and can’t make their communications understood. It often starts with, “My child is so severely autistic that…”

So our most vulnerable community members are on the top of my mind when I engage in advocacy because: 

• They deserve to be seen and talked about in a way that isn’t the Autism Warrior Mom™ narrative of “can’t communicate, can’t even blink without help, wears diapers at 28, smears poop, makes my life hell, I hate autism.” (Okay that’s a bit exaggerated, but it’s pretty much the Autism Warrior Mom™ narrative.)
• They get abused, and can’t tell someone because their aggression is treated as problem behaviors instead of a cry for help.
• They have a right to their privacy and dignity, yet caregivers violate it all the time by sharing their business all over the internet. Imagine if nurses took video of Stephen Hawking being bathed and posted the video of his naked body online– there would be tremendous outrage from everybody! Why? Nobody (aside from conspiracy theorists) ever questioned Stephen Hawking’s competence and personhood.
• Caregivers should have access to services and care without having to jump through a million hoops for decades. The staff in group homes need to be trained to take care of autistic people with extensive support needs / complex medical needs. There is no excuse for parents to hear “Oh, I’m sorry, we can’t handle somebody that complex.”
• The focus should be on what is driving the autistic person’s behavior rather than the behavior itself. An autistic person who keeps smashing their head against the floor could be in awful pain from an ear infection, toothache, sinus infection, migraine or a tension headache. They could have tinnitus (ringing in the ears) or are itching from head lice. Or, it could be because they’re understimulated and are sensory seeking. But caregivers would rather put a helmet on them and lament that their kid is head banging again instead of figuring out why.
• They deserve a world that believes they are capable of having wants, needs, emotions and thoughts of their own, but right now they’re always a prop without agency in their parents’ “autism journey” stories. Basically, they’re trotted out as the reason autism is the worst thing ever and then shut away again. That needs to stop.

Too often autistic people who need extensive support and can’t make their communications understood are overlooked or kept hidden, but I seek to recognize their existence. I want to fight back against the rhetoric that says they’re less than human and incapable of communication.

One way to do that is to kill the notion that autism is only acceptable when the autistic person is just a little socially awkward and unfashionable. True autism acceptance is accepting all aspects of autism.