ADOS-2 score of 10, but "only" diagnosed with SCD?

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Hello,

After two nerve-wracking weeks of waiting, I finally received my psychological evaluation results via email today. This document included my diagnosis (Social (Pragmatic) Communication Disorder), a summary of the evaluation, the scores from the SRS-2 questionnaires my family members filled out, and the results of the ADOS-2 test that was administered to me.

I had honestly been expecting an ASD diagnosis, based on exhibiting most of the diagnostic criteria of the DSM-V since childhood. I was indeed surprised to see the diagnosis of SCD, and was further surprised when I read through the psychologist's notes and saw my ADOS-2 score, which was at the cutoff score for ASD (which I have read online is 10). (To break it down, I got a 2 in Communication, an 8 in Reciprocal Social Interaction, and a 4 in Stereotyped Behaviors and Restricted Interests. My score for Imagination was not noted, just that I have "a great deal of imagination and creativity").

I know the ADOS-2 isn't the be-all and end-all for autism diagnosis (and my evaluation included an interview and the MMPI-2-RF and MCMI-IV tests, as well), I was just curious if it's common for individuals to score at the cutoff, and yet ultimately end up not having ASD. I can choose whether or not to have a follow-up consultation with the psychologist who evaluated me, but I'm just not sure whether I should pay the extra hundred-twenty dollars to do so.

Thank you for reading

Welcome to WP. Hopefully someone can answer you as I don't know much yet as I am on a list to be assessed.

Hello, Mountain Goat! Thanks for the warm welcome

I hope you're able to get assessed soon, as well!

I think I am going to seek a second opinion. At multiple times in the diagnostic report, the psychologist pointed out my repetitive behaviors and restricted interests, but she seems to have ignored those behaviors and concentrated mostly on my social issues.

Weirdly, it says right next to the SCD diagnosis that it was "formally know as Asperger's", which is not accurate. From what I have read, SCD replaced PPD-NOS in the DSM-V. Individuals diagnosed with PPD-NOS before the DSM-V was introduced were grandfathered into the ASD diagnosis, and now individuals who fit the PPD-NOS description get a SCD diagnosis instead, which is off the spectrum. Just very confusing

This experience left me with more questions than answers, but I will continue to seek assistance from another professional.

So just to compile some test results:

ADOS-2: combined social score of 10. stereotyped behaviors/restricted interests is 4
RAADS-R: average of 140, based on taking it multiple times
AQ: 36
EQ: typically <15
SRS-2: 76 (self score), 81 (scored by family member)
MMPI-2-RF: Invalid
MCMI-IV: Cluster A and C personality features

I've been looking for an old report of mine so I could answer your question about the ADOS cutoff scores, but I haven't been able to find it.

Have you tried searching for the information online?

The clinician who evaluated you is supposed to give you a feedback session to discuss the results, at which time you should be able to ask questions. The session could take place during a phone call. Ask for the feedback.

Regarding what you wrote about paying more money, I'm not sure what that is for. I don't think charging clients for a feedback session is allowed. Clinicians have to follow certain rules when they administer these evaluations. If the clinician won't give you feedback or wants to charge you for it, I would try to find out whether that is allowed. You might ask the board that certifies psychologists in your region.

You asked for false positives. I got a false negative: I scored below the cutoff for ADOS-2 but was diagnosed with "mild to moderate" ASD in any case. My score was 5 or 6. I posted in Dec-2019 on the Women's board here how pissed I was by the ADOS-2. I paid the extra $125 to talk to my assessing dr. Previously I was (incorrectly) diagnosed Bipolar.

So when I originally inquired for an evaluation at this clinic, they took my insurance information, contacted my provider, and were told that everything would be covered. A few days before my evaluation, the office manager called me and said there had been a mistake during the insurance processing (I guess they had been given the wrong info from my provider?), and that actually it would be out-of-pocket for everything. They were very apologetic about it and gave me a huge discount on everything, and I went ahead and got the testing done there since I'd already done the initial 1 hr consultation with them and already had to wait a month for the testing.

The post-evaluation discussion would also be out-of-pocket, so that's why I was hesitant to go and pay for it (and I found out it would be closer to $200. I totally misheard them when they first brought up the price, that was my mistake). I'm now searching for more in-network providers, and will double-check with my insurance provder myself that they are indeed covered.

The same thing has happened before with the insurance provider, unfortunately :/

I am from Poland and I do not know anything about ADOS or about details of ASD diagnosing process in America but I want to say something about diagnostic terms like ASD, PDD, NVLD and SCD:

I think that SCD individuals (like many, if not most, individuals with so-called nonverbal learning disability) in fact have a pervasive developmental disorder, not just a specific developmental disorder or communication problems. SCD is not the counterpart of PDD-NOS from DSM-IV/ICD-10 (which is used in my country) in my opinion. IMO only disorder in DSM-V which is "equivalent" to any PDD ("classic" autism, Asperger's syndrome, PDD-NOS) from DSM-IV is autism spectrum disorder (ASD), because ASD is a complex condition which last since childhood and PDDs are complex (even people with mild forms of PDDs have marked "peculiarities" in social, emotional and behavioral areas since pre-pubertal age) and their symptoms/"anomalies" are not just restricted to communication.

Yeah, I've been reading a lot about SCD since getting the diagnosis, and there seems to be some contention in the professional realm regarding it's legitimacy as a disorder. I personally think it's legitimate, and I agree with you that it should be seperated from Autism spectrum disorders.

I just don't feel like it accurately describes me completely. Do I have a lot of social difficulties? Oh, yes! Ever since I can remember. But the diagnosis doesn't paint the whole picture for me, it doesn't explain my history of repetitive behaviors or my limited interests or my sensory issues. That's why I'm wanting to get a second opinion, if that makes sense.

It might be that your repetitive behaviors, limited interests, and sensory issues weren't considered clinically significant. That's the case for many people who have milder forms of neurodivergence. For example, NVLD and ADHD are heavily associated with those three symptoms, but they don't cause functional impairments for most people with those disorders, so the traits aren't considered a core part of the diagnosis. They're what you might call "peripheral traits."

Most doctors place a greater emphasis on functional impairments rather than those traits that are more personality-based and don't disable you. It helps differentiate between neurological/developmental disorders that present very similarly. In my opinion, it's a good policy. If you don't have any reason to doubt the competence of you doctors, I would stick with the label they gave you. I was diagnosed with NVLD when I was tested, and although I was initially reluctant, I later came to understand why that distinction was made and appreciated it.

Yeah, that's a great point I hadn't considered. I guess I was just hoping this experience getting evaluated would provide a complete answer for everything, so my expectations probably weren't reasonable from the get-go. Like, "Here you go, here's all the reasons why you do all these things." But I just got the reason for the social stuff so it left me really confused. I haven't actually made any new appointments yet or anything so I might just ruminate on this longer.

Thank you for sharing your experience with your diagnosis, I appreciate it

I think that SCD (always) and NVLD (usually?) are other conditions from the same subgroup of neurodevelopmental disorders as ASD and I think that it is possible that some people with NVLD or SCD will have worse level of functioning than some people with clinical ASD, at least than some people with ASD level 1! ADHD has not to be (always) a "pervasive developmental disability" like ASD, SCD or most of NVLD, dyslexia appears to be even less "pervasive". I think that many people with NVLD or SCD require support, just like ones with milder clinical form of ASD.