ASD Assessments

Assessments for Autism Spectrum Disorder (ASD) are sometimes a piece of work. I'll look at two of them here.  As a reminder, everyone with ASD is really different from one another. If you know one person with autism, you know one person with autism. The diagnostic categories are general and symptoms can be incredibly broad. 

The ASSQ is about 25 years old but still used today. It's to be completed by people who live or work with the person in question. It mainly just asks, "Is this person weird?" Check out the use of language: Do they behave in a way that's eccentric, idiosyncratic, with a deviant style of communication, fussy, old-fashioned, robot-like, with a deviant gaze, unusual facial expressions, ungainly, awkward, bullied by others yet surprisingly good at some things, and, of course, lacking empathy.

Lacks empathy is a highly contentious item on ASD assessments. Many people with ASD have no problems experiencing profound empathy, and many are even empaths or highly-sensitive individuals (HSIs). The belief that there's no empathy in place is sometimes from misunderstood social cues, but sometimes it's from an expressionless reaction (flat affect) to a person despite a whole host of empathetic feelings going on internally. Communication differences for people with ASD can be in receiving or sending unspoken information.

The AQ-10 is just ten years old. It's to be completed by the person themselves, and it's only10 questions, five on social cues, four on focusing, and one on collecting things. It's far less offensive, but I imagine it would miss many cases because its communication questions are only about receiving information. I'm stellar at assessing and intuiting social cues of others, so I would show up on those markers as not at all ASD. I can't demonstrate the typical facial expression and tone, but that's not asked. I sometimes listen by looking away or standing silently while people talk, taking it all in, noticing their gestures and where they're looking. I'm often the first one to guess who's sleeping with whom or who's having relationship issues or what the power dynamic is in the group. But nobody can infer what I'm thinking or what I mean by my face, tone, or gestures. I've worked on this for 50 years, and I've decided it just is what it is. Now I think we need to shift our strategy to get everyone else trying to be a bit more open to literal communication methods and, maybe, actually believe me when I say how I feel. People often think I'm in love with someone or despise them or I'm just being nice about something and hiding my true feelings. The number of arguments I've had with people on this one. Sheesh! 

The focusing questions all follow the stereotype that people with ASD can't switch gears from one activity to another. So, if that's not a person's specific issue, then this test would miss them. 

And collects information on a topic? Are there people who don't like to amass trivia in a corner of their brain about.... sports, or politics, or movies, or something? That one could apply to everyone with any interests. 

Why not have an assessment that more closely follows the "official" diagnostic criteria? (ETA: I made one, the AQ-27, from the DSM critiera.) There's really just three things that can show up in a wide variety of ways: 

Some type of social communication/interaction difference, which might include an inability to infer meaning of facial gestures, but it also might mean an inability to know when to speak in a group or how to stop info-dumping. It might mean an inability to make friends, but it also might mean they connect well with people like them, which are just statistically relatively rare. 

A couple of interesting studies found that people with ASD can communicate perfectly well, just with others with ASD. One explains,

"The Double Empathy theory would suggest that communication difficulties arise from a mismatch in neurotype, and thus information transfer between autistic people may be more successful than information transfer between an autistic and a non-autistic person. . . . We found a significantly steeper decline in detail retention in the mixed chains, while autistic chains did not significantly differ from non-autistic chains.  . . . These results challenge the diagnostic criterion that autistic people lack the skills to interact successfully. Rather, autistic people effectively share information with each other." 

And the other:

"Many autistic people are motivated to have friends, relationships and close family bonds, despite the clinical characterisation of autism as a condition negatively affecting social interaction. . . . Participants identified that they often felt they were better understood by other autistic people." 

They felt more belonging with others with the same neurotype and often felt like they had minority status in mixed groups. So it seems much less a deficit in communication than a difference. 

Then two of these four are necessary for a diagnosis: 1. Repetitive behaviours, interest, or activities, which could show up in a strong preference for a routine or an ability to eat the same thing for breakfast every day. 2. Hypo/hyper awareness of sensory stimuli which could mean an intense irritation when people smack their gum, an inability to last in a Best Buy for more than a few minutes, or an unusual ability to tolerant pain. Lots of people with ASD are told to exaggerate any pain they feel or else a doctor will misdiagnose them, like, completely miss a broken bone. 3. Fixed or intense interests which could be the stereotypical love of trains or it could be a vast knowledge of sports stats. 4. Repetitive movements or speech which could look like hand flapping, pen tapping, or repeating words they hear. 

There's also criteria about the symptoms: they started as a kid, caused problems for them in some way, and aren't better explained by an intellectual disability. That they cause some kind of problem is an important part of the diagnosis, and level 1 ASD might completely disappear as a chapter of the DSM if people were just a bit more accepting of differences in order to eliminate any problems! 

Another common trait I've noticed in myself, my kids, and the teens I've worked with over the years is the need to understand why they have to do something before they'll be remotely willing to do it. I won't believe anything without substantial evidence. Following along with the crowd isn't going to happen. Somehow thinking for yourself is seen as a deficit, though. And needing instructions to be specific isn't about being unable to grasp inference, but about having a higher standard of accuracy. Close enough is just setting people up for failure. I had to write an assignment that used outside sources. I later discovered that most people used two because it said sources so it couldn't just be one, and they intended to do the least amount of work possible. I used 16. I learned more through that research, but I've discovered that the love of learning is also rare. 

A diagnosis can really help people better understand themselves and others. So it's important to get it right. Unfortunately, a diagnoses can also provide an opening for calling someone "weird." And once there's an opening, people will take it. I once had dirt on my glasses that I couldn't find when I took them off, so I cleaned them a few times in a row until I got it. A friend commented on this behaviour as if it were a bizarre compulsion. He took me aside to tell me I was cleaning my glasses repeatedly, like he was helping me. Any diagnosis from the DSM can turn people into participants from the Rosenhan experiment in which perfectly normal people were admitted to a psych ward to see if doctors would notice. The doctors recorded that they have compulsive note-taking behaviours and kept some of them there almost two months. 

People start to look for proof that you're different from them instead of just recognizing that we're all different from one another. I don't see any signs of this changing any time soon.