A few months ago, I took part in an autism research study and got an informal evaluation as part of it (in order to get sorted into the ASD or NT group for the study). It was a way to get some sort of evaluation without paying an exorbitant amount of money (I'm in the US). Well, it kind of confused me more?
The researcher interviewed my mom for the ADI-R, which indicates ASD:
A: Qualitative Abnormalities in Reciprocal Social Interaction: 16 (cutoff 10)
B: Qualitative Abnormalities in Communication: 15 (cutoff 8)
C: Restricted, Repetitive, and Stereotyped Patterns of Behavior: 3 (cutoff 3)
However, I got a super low score in the ADOS-2 (Module 4) which super doesn't indicate autism:
Social Affect: 3
Restricted and Repetitive Behaviors: 1
Total: 4 (ASD cutoff 8, autism cutoff 10)
Calibrated Severity Score: 2
The weeks after the ADOS, I kept thinking of ways I could've improved my behavior, but apparently I act pretty neurotypically! They also administered an IQ test, and I took a bunch of tests online that I wasn't able to see the results of. The few I can remember are RAADS-R and AQ, but there were some others. Since the evaluation were informal, I didn't get an analysis or full report or anything like that.
I did get to talk with the head researcher to go over the results, though. He said that I didn't meet diagnostic criteria based on my ADOS score. He said that the researcher who administered the in-person tests was really experienced and had administered hundreds of ADOS/ADI-R/IQ tests, so to get such a low score means I don't exhibit any autistic traits. I asked if that means I'll get sorted into the NT group and he said yes, but then looked at the results of the online tests I took and said that one was super high over the cutoff, which means I would be sorted into the ASD group. Unfortunately I didn't ask for more clarification, nor remember what test it was, but had written down some notes that it was for "social relatedness" and the cutoff was 60, but my score was 109.
He said that this might indicate that I'm "very high-functioning", and talked about how there's a population of people who may have been diagnosed with ASD when they were younger but "grow out of it", or rather, learn coping mechanisms and skills and are no longer diagnosable when they're older. It's something he wants to do more research in, and unfortunately I didn't ask more about this either because I was getting a bit overwhelmed because I didn't know how to feel about all this information.
Tbh, the results kind of match how I feel – that is, I was super awkward and weird as a kid and really didn't notice much about the other person in my interactions (I probably am still awkward lol). Something changed near the end of high school, through college, and even now, though. I remember the moment when I realized that maybe I should look at people's eyes instead of their teeth sometime during high school. I got interested in animation during college, which is all about knowing and conveying emotions, so I started studying that too. I also realized/learned some of the expectations that people have regarding the flow of a conversation, and remember being so amazed at how just asking a person about themselves or asking for more clarification can continue a conversation. So I think now, I act pretty neurotypically.
The thing is, acting like that and being social takes so much energy. I have the privilege to structure my life so that I can be a hermit for most of the time to recover. I have a full-time job and am honestly not the best worker or most organized, but can compensate enough not to get fired, lol. So…am I autistic? I don't feel like I can claim that for myself just because I have built up all this knowledge of how to act – I don't even know how I would act if I wasn't conforming to social pretenses I've learned. And getting the informal evaluation has kind of affirmed that? I just feel like if I say I'm autistic, other people will not believe me. I guess I'm not sure what the difference would mean for me, either (identifying as autistic or NT – for now, I identify as neurodivergent).
Has anyone else gotten an evaluation through a research study? Has anyone else gotten conflicting scores on their ADOS and ADI-R?
The researcher interviewed my mom for the ADI-R, which indicates ASD:
A: Qualitative Abnormalities in Reciprocal Social Interaction: 16 (cutoff 10)
B: Qualitative Abnormalities in Communication: 15 (cutoff 8)
C: Restricted, Repetitive, and Stereotyped Patterns of Behavior: 3 (cutoff 3)
However, I got a super low score in the ADOS-2 (Module 4) which super doesn't indicate autism:
Social Affect: 3
Restricted and Repetitive Behaviors: 1
Total: 4 (ASD cutoff 8, autism cutoff 10)
Calibrated Severity Score: 2
The weeks after the ADOS, I kept thinking of ways I could've improved my behavior, but apparently I act pretty neurotypically! They also administered an IQ test, and I took a bunch of tests online that I wasn't able to see the results of. The few I can remember are RAADS-R and AQ, but there were some others. Since the evaluation were informal, I didn't get an analysis or full report or anything like that.
I did get to talk with the head researcher to go over the results, though. He said that I didn't meet diagnostic criteria based on my ADOS score. He said that the researcher who administered the in-person tests was really experienced and had administered hundreds of ADOS/ADI-R/IQ tests, so to get such a low score means I don't exhibit any autistic traits. I asked if that means I'll get sorted into the NT group and he said yes, but then looked at the results of the online tests I took and said that one was super high over the cutoff, which means I would be sorted into the ASD group. Unfortunately I didn't ask for more clarification, nor remember what test it was, but had written down some notes that it was for "social relatedness" and the cutoff was 60, but my score was 109.
He said that this might indicate that I'm "very high-functioning", and talked about how there's a population of people who may have been diagnosed with ASD when they were younger but "grow out of it", or rather, learn coping mechanisms and skills and are no longer diagnosable when they're older. It's something he wants to do more research in, and unfortunately I didn't ask more about this either because I was getting a bit overwhelmed because I didn't know how to feel about all this information.
Tbh, the results kind of match how I feel – that is, I was super awkward and weird as a kid and really didn't notice much about the other person in my interactions (I probably am still awkward lol). Something changed near the end of high school, through college, and even now, though. I remember the moment when I realized that maybe I should look at people's eyes instead of their teeth sometime during high school. I got interested in animation during college, which is all about knowing and conveying emotions, so I started studying that too. I also realized/learned some of the expectations that people have regarding the flow of a conversation, and remember being so amazed at how just asking a person about themselves or asking for more clarification can continue a conversation. So I think now, I act pretty neurotypically.
The thing is, acting like that and being social takes so much energy. I have the privilege to structure my life so that I can be a hermit for most of the time to recover. I have a full-time job and am honestly not the best worker or most organized, but can compensate enough not to get fired, lol. So…am I autistic? I don't feel like I can claim that for myself just because I have built up all this knowledge of how to act – I don't even know how I would act if I wasn't conforming to social pretenses I've learned. And getting the informal evaluation has kind of affirmed that? I just feel like if I say I'm autistic, other people will not believe me. I guess I'm not sure what the difference would mean for me, either (identifying as autistic or NT – for now, I identify as neurodivergent).
Has anyone else gotten an evaluation through a research study? Has anyone else gotten conflicting scores on their ADOS and ADI-R?
