On the RAADS-R
Like all my rabbit-hole researches, I ended up far from where I started.
I had long given up on peace in my brain when I first took the Autism Quotient in May of 2022. I had been doing research on the mind’s eye after finding a TikTok of someone describing Hyperphantasia who happened to be Autistic, diagnosed at 33 years old.
A thought flashed:
The AQ confounded me. I didn’t understand a lot of what they were asking because a huge portion of my childhood was repressed and I could only answer from a present day perspective as much of my self awareness could muster. I scored before the threshold of Autism consideration. Of course I’m not Autistic. That’s something you know.
Before I clicked off however, I saw this:
Figure 1 Embrace Autism’s prompt for additional inquiry
Questionnaires are the delights of late night internet surfs, so I continued. Jesus though, these questions…
This was too much brain power for 10:30 pm and I have questions for the questions. How am I supposed to remember this before I was 16? What’s with 16? Did I actually know the phrase or did someone explain it to me? Can we ever actually know anything that isn’t taught? When I was a kid I just started reading, no one showed me. Maybe they meant like that?
With impatience showing up around question 20, I did my best, ignoring many “when I was young” options unless I remembered it instantly.
Figure 3 My tabs before I knew anything about Autism, the DSM change of Aspergers, my math disability but fully knowing I needed mental assistance. I find this screenshot a fascinating document.
Woah. Ok. Considering the threshold of Autism consideration for RAADS was 65, I mean, that’s a lot. Then, as she often does, my 11th Grade English teacher Mrs.C popped into my head with her seminal question:
So What?
Mrs. C always came back to this phrase when helping us deliver arguments to our thesis. This RAADS-R test thingy didn’t answer shit-it just created more questions. So I took it again. Maybe I inflated my answers and should be a bit more cautious. It returned as 156. Ok. This is a tomorrow problem.
The Ritvo Autism Asperger Diagnostic Scale-Revised was developed by Edward and Riva-Ariella Ritvo in 2011, prior to the DSM-5 changes that absorbed Aspergers along with a host of other Autistic related disorders (Rhett’s, Childhood Disintegrative Disorder etc) under the umbrella we know today as ASD.
Five years prior to writing this 80 item questionnaire, the authors compiled a preliminary report in 2006 theorizing that Aspergers Disorder was a mild* form of Autism. Their findings after clinical study on those diagnosed with Aspergers and those with Autism, was that the differences were negligible across their life spans, providing clinical evidence that supported the hypothesis Aspergers is Autism.
This debate of Autism versus Aspergers is storied and continuous. Even to this day despite its removal, advocates, clinicians and autistic people debate the utility of merging each disorder to ASD, despite its relation.
But, back to RAADS-R
I decided the internet was too misleading. If I wanted to understand what Autism was and how it could apply to me I needed books with citations. I did not want to be influenced. I wanted to be informed, without anyone else’s opinion or experience clouding my view.
RAADS and Social Media
Once I felt I had cursory knowledge of what Autism was, I slowly went online to seek out the lived experience of Autistic people. I got barraged by 30 second lists of traits, loads of bad faith comment threads and quickly saw the massive infighting that was present.
My feed got dense with content I couldn’t verify wether as accurate when everyone and their mother began taking the RAADS-R. Video after video of people showing their high scores, saying they took the test for fun. I’m very particular about words and language. I could have accepted curious, interested-but fun?
There was pushback from this influx of test-taking, with other creators with lived and professional experience calling for a judicious, critical eye when doing online self-reports. Many cited this study on the effectiveness of RAADS as a tool to predict ASD in individuals. From the Abstract Discussion:
The aim of the study was to evaluate the effectiveness of the RAADS-R as a screening tool for predicting the presence of ASD in an adult population of service users referred to a specialist ASD diagnostic service. The results suggest that when used as a self-report screening tool, the RAADS-R was unable to discriminate between ASD and non-ASD cohorts. Troublingly, scores on the RAADS-R only had a 3.03% chance of detecting the absence of ASD in our sample, rendering the assessment futile. The results here are disappointing given the recommendation by NICE for the inclusion of the RAADS-R assessment in the diagnostic pathway
Ok. Mrs. C’s words echoing in my head, So. What.
At first the idea of being unknowingly autistic did seem funny to me, probably in a very ableist way from the viewpoint I had. As I studied everyday to know more, I learned the implications, impact, ableism, stigmas, lack of resources, suicide rates and premature deaths from elopement or trouble sensing danger.
Day by day, the shallow humor of the possibility was displaced by this feeling like the earth I was standing on was about to give out. I relied, probably for the first time ever, on my initial thoughts that the internet is not going to really help me right now. This sense of urgency to know if my RAADS results meant anything was smothering me. I needed to know if what I had been dealing with all this time is ASD and not nebulous anxiety. Because my life and its current shambled state is not a joke and certainly not fucking fun.
In late December 2022, I was chatting with my mom after a specific memory had popped up.
I really couldn’t believe why she didn’t mention this in my initial development sheet that my psychologist asked for. When I told my psych this, he paused.
“That’s important.”
No shit.
A while later I re-took the RAADS. After months of digging into my past, talking to my parents and having confronting memories just barge in, I had a lot more information on myself.
Fig 4 With more information, my score took a great jump. I carefully considered the questions not just in the present day but also including my past. It went from What’s this about to Crap-thats fairly high.
RAADS as “sub clinical presentation”
For such an elevated score on a ‘sub clinical’ report, my restricted and repetitive behaviours were so clear, observed and commented on; my attempts through major and minor life transitions were markedly difficult, hidden to no one, masked only in adulthood due to the life I created never had anyone close enough to see. I don’t relate to any videos or books that discuss this pain of not being yourself as a late dx Autistic and I find solace in the stories of those diagnosed early. For me, they are much more relatable.
I think being raised in a household of non-conformists also nurtured this F.U attitude about how others perceived me.
What people have called “naïvety” I think was actually my inability to pick up between the lines. I didn’t know why I was the target of torrential verbal abuse, bullying and overt intimidation, but I didn’t think I was different for it. I was just…confused. Every social pain I cried about at home was treated like a them problem. Fuck them, Fuck you, Fuck this, Fuck that, above all don’t stop being yourself. Fuck it! They don’t like it, they can Fuck Off! My parents never treated my bizarre requests, needs for safe foods and probably painful shunning of family connection time as something wrong. Sometimes concerning, but rarely was I admonished for it. Only if I was being a dick about it (either purposefully or by accident). I wanted to be alone, so they left me.
RAADS in Clinical Setting
The self-report nature of this assessment may mean that individuals with low reflective capacity/insight score low on the RAADS-R despite having diagnosable Autism. It is therefore recommended that clinician’s inspect individual responses to items to judge the veracity of self-reported problems.
I was not given the RAADS in my clinical assessment, so I cannot speak to how it may go under observed settings. I was administered 26 testings in total over the course of 6 hours, split on different days.
Overall Reflection
RAADS was the thing that caught my attention. It made me listen. There were so many clues, cues, beyond obvious signs, camouflaged moments to sort out. I have often been accused of being cynical, too much of a skeptic and unwilling to accept things, any things, in faith unsupported by clear evidence. Even though it pisses me off people take the test for fun, ultimately it doesn’t affect me and how I chose to weigh it. However, wether or not RAADS contributes to the watering down of Autism by over generalizing traits and circumstances is worth considering.
I chose to the bitter end of my Dr. zooming me my results to hold space for the possibility I may not be Autistic. I didn’t tunnel down this rabbit hole for nothing. I tunnelled for the truth, my truth, whatever it may have been in the end. If it was true, then I want it on paper. I wanted my life’s suffering that even psychologists commented on, documented. I wanted my vulnerability in writing for all the times I was groomed, taken advantage of, used. For me, being clinically validated was the first step in actually beginning to heal, decades after starting therapy.
If I had found the RAADS in 2013 after reading a random blog post on Autism, maybe things would have been different. I recognized a lot of myself in that post, casually mentioning it to a pal who promptly scolded me for even considering it, since after all it’s a serious disability and I would have known by now if I was. Maybe it wouldn’t have taken me another 10 years to confirm what I already, deeply knew. They were right. It is serious. And they were also fantastically, novel-twist worthy wrong on the other part.
But that’s another story.
sources
*Please note I use language that is present in papers and during specific time periods. I do not condone the use of the R word or subscribe to the mild, moderate and severe when used out of clinical or situational contexts. To add: these types of studies are often conducted on verbal participants. Advocacy and work is still being done to include non verbal and minimally speaking folks who are frequently left out of seminal studies. RAADS was specifically designed for clinical IQ participants scoring above 70.
I really want to punch that 2013 "friend" in the face