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ADOS-2? (Module 4)

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FlyOnTheWindscreen

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I was in contact with my local autism center for diagnostic purposes, I ended up there through a grapevine of references.

Now, I don't know what testing is available, but I thought all of it would be DSM(DSM-5?) based. This center offers ADOS-2 testing. I am scheduled for a consultation there tomorrow.
Here are the offered services:
In this initial meeting, you will speak with a team member from the Behavioral Health Clinic regarding delivering the ADOS-2 diagnostic assessment to you or to your dependent. The team member will ask you questions regarding the client receiving the assessment and will help you select the most appropriate service:

- The "Full" Diagnostic Evaluation - A two-part assessment in partnership with a psychiatrist. Along with the ADOS-2, the psychiatrist will conduct a historical interview and may provide other indirect assessments. This service may explore diagnoses other than Autism Spectrum Disorder. The report provided at the end of this service will include medical diagnostic codes, if appropriate, and can serve as formal diagnoses.

- The ADOS-2 Administration and Reporting "Only" - A Faison clinician will conduct the ADOS-2 diagnostic assessment with the client. The resulting report does not constitute a formal diagnosis, but may be provided to a pediatrician or other diagnosing physician as part of their own comprehensive diagnostic evaluation.

Both services include a 30 minute "debrief" session with the clinician and/or psychiatrist to review the results of the report as well as individualized recommendations based on these results.
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The "full" would be north of $2000, while just the ADOS-2 test without an official diagnosis (to be read by another psychologist or a psychiatrist) is $450. The gentleman who returned my call suggested the test, but he said I would likely be recommended the full evaluation at the consultation tomorrow. The availability for "full" is 6-7 months away, while just testing is within a month.

Is ADOS-2 considered to be a good test for high functioning autism/Asperger's clients, about at the level of members who make it to a forum like this one? I'm an adult in my mid-30s.

I did a quick Google search immediately after their response and the top result was the following horror story:
Feeling Humiliated By the ADOS 2 Module 4 Assessment ...

This is essentially my worst fear, being mocked by a test that is designed for children, with a presentation designed for a child or a person with severe intellectual impairment. Now, granted, I might struggle with those assignments more than the author, but I feel this is a valid concern. Do any other adults here have experience with ADOS-2?

My self-assessment is largely based on reading and cataloguing the book by Tony Attwood, A Complete Guide to Asperger's Syndrome, from DSM-4 era. The book offered rather accurate portrayal of challenges in my social development through various periods of my life, putting a heavy emphasis on the social challenges of individuals with Asperger's Syndrome. I'm getting the impression that ADOS-2 does not explore that aspect...?

Please comment to let me know what the sentiment regarding ADOS-2 is. If I only do the test, how hard would it be to find a separate specialist to have the results read?
 
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ADOS is part of a comprehensive ASD evaluation.

I did my assessment five years ago and it included ADOS-2 Module 4, but also these other tests:


ASD Tests.png



I wasn't given an option of only doing ADOS and I didn't even know what that was at the time.

I've also heard many, many horror stories about people "failing" ADOS. Myself, I didn't know what it was, or the significance of it when it was happening, but it didn't seem too childish or anything. I'm a writer, so I wasn't offended to have to deal with children's stories. I had no idea if I was supposed to be good at it (be creative) or have trouble with it (be literal), so I couldn't sway the result either way.


I ended up "passing" it, but I don't know what my score was. All it said about ADOS in my report was this -

ados.jpg


I ended up being diagnosed with Level 2 or Moderate, but I'm sure it wasn't solely based on the ADOS score.

Personally I'm glad I did a comprehensive eval because I got really interesting data and feedback on all the other measures. It was also around $2K and I couldn't afford it, but I'm glad I bit the bullet anyway. You never know when you'll need that information for something else.
 
A diagnosis is usually made after a variety of assessments, of which the ADOS could be one of them.

There are no uniform standards for how assessments are done.

A diagnosis under DSM-5 for example should include interviewing someone who knew the person as a young child, but some waive that and accept the person's statements on their own.

I guess my question is what your motivation is for seeking a diagnosis given you seem comfortable with your self-diagnosis?
 
VictorR said:
A diagnosis under DSM-5 for example should include interviewing someone who knew the person as a young child, but some waive that and accept the person's statements on their own.

I guess my question is what your motivation is for seeking a diagnosis given you seem comfortable with your self-diagnosis?
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I heard about that. I think that would be a non-starter at this point. A few years ago when I began asking questions, I asked my mother to confirm specific details from my childhood that I remember, at first she was cooperative, she had a lot to say about my unusual nature and the doctors I visited. She said that everything was being explained by alleged birth trauma. As I asked more questions I guess she sensed that something was wrong and had completely clammed up, refusing to speak of it again or answer anymore questions. There is no point to ask her to come to an interview now, she wouldn't do it.

I've had a turbulent couple of years, I've been living apart from my parents for about 4 years now. I had a lot of hope for comfortable independent life, however I am coming to terms that I have failed at independent life, I still require a good amount of support in my daily activities. My family is impatient with me as ever, and a diagnosis may help establish and explain why I continue to require help doing certain things (not financial).

I'm also increasingly concerned about my complete social isolation, and what prognosis for me could possibly be.

I accomplished much, and tried my best. My deck is just short of a few cards.
 
I didn't take anyone to mine. My mother's in her 80s and my dad is deceased. I wrote a 180 page response to the Developmental History questionnaire. In fairness it had a LOT of questions, and they wanted examples and details. I included old family photos and filmstrips, school reports, notes from my friends when I was an adolescent, and all sorts of "tangible" proof about how .. weird .. I was as a kid.

My kids were in their 20s so they sent my daughter a bunch of encrypted questionnaires via email during my assessment. That way I couldn't confer with her about what to put for the answers. They were multiple choice personality inventory types of questions, and they took her a couple of hours. She sent them to a third-party group in USA somewhere rather than my assessment place, so they'd have an objective point of view and second opinion. That was standard, and not because it was my daughter rather than a parent. I also did the same questionnaires when I got home to see if my answers were somewhat in keeping with hers.

If my daughter hadn't been available I'm sure my own info would have been sufficient. The clinical tests during assessment aren't subjective so you can't fake your answers, and you wouldn't need anyone else's input on those. They were number and word tests where I had no clue what they were looking for in terms of autism, as well as parts of IQ tests to check my verbal and non-verbal scores.
 
ASD book.jpeg



Here's what I wrote. lol -- The poor woman. I was kind enough to add appendices and a Table of Contents which matched up with all the Developmental History questions.
 
Ella Spell said:
I didn't take anyone to mine. My mother's in her 80s and my dad is deceased. I wrote a 180 page response to the Developmental History questionnaire. In fairness it had a LOT of questions, and they wanted examples and details. I included old family photos and filmstrips, school reports, notes from my friends when I was an adolescent, and all sorts of "tangible" proof about how .. weird .. I was as a kid.
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Most materials from before I was a teenager did not survive. There were some life-changing events and a move where I didn't get to bring much with me.

I'm thinking maybe to ask them if it's possible to break up the package, do ADOS-2, and then come back for the rest months later if I feel I need it.
 
FlyOnTheWindscreen said:
180 pages though, did they read all of it? :grimacing:
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I sent it to her by courier about two weeks ahead of the appointment, and put a note saying that I didn't expect her to read it all. I also said I was willing to pay extra for her time, if she did read more than expected.

At the assessment I apologised but said I wrote it mostly for my own understanding, like an autobiography using her question prompts as a springboard. She said she knew when she first saw it that I was autistic (lol), because of the attention to detail. Reading it she knew because I remembered my thoughts from every stage of my life, not just my actions. That's because I live in my head.

She said she'd read a fair amount using the appendix and she liked the way it was organised. She didn't charge me extra. I offered to take it home at the end so she wouldn't have to keep it in a filing cabinet somewhere for the rest of time, but she said she'd keep it. I would have sent it electronically but her company wouldn't allow incoming email that wasn't encrypted or security screened for viruses - especially not a file of that size with multimedia attachments.

I have the questions somewhere if you're interested. Like I said, there were A LOT. I don't know how anyone could answer them with any degree of evidence using fewer pages, to be honest. I'll have to look for them.
 
I don't think I had that.

I actually remember two picture books.

The one where I made up the story was a boy dreaming about chess pieces.

The other one was The Mysteries of Harris Burdick, which I already knew quite well.

I forget if Harris was part of ADOS or what it was for.
 
Ella Spell said:
This is a great idea.
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So they allowed me to break it up.

On one hand I didn't like that they're overly enthusiastic to diagnose people, but on the other hand I'm less likely to end up with the horror scenario like in the linked article where the person administering ADOS-2 Module 4 doesn't have adequate experience with it. At this autism center it is all they do. So that's scheduled for August 28th.

Their full diagnostic suite size varies at their discretion, they determine that at the interview. But they said it will be far shorter than the 14 component list you've posted. Their comment was that some of those are better suited to children anyway. I do feel like they'd be lowballing me, as each component would have a report and feedback would be given, but on the other hand their contracted psychiatrist is billed by the hour, so I wouldn't pay as much because there would be fewer reports to prepare. They did sell me on the fact that I'd have difficulty finding a specialist that would read my ADOS-2 results for me and provide a formal diagnosis for me, unless I had already been seeing them. I've had a really hard time finding and scheduling specialists so far. Another thing they sold me on that being a local autism center, with a school and a live-in campus for adults they would be able to recommend resources for me based on the results and my needs. They did warn me that I will likely need childhood diagnostic documentation to seek funded assistance services. So that's scheduled for March of next year.

I'm still expecting to try with other offices in the meantime, but I feel like it's likely I'll end up with this scenario.

I'm waiting on the email with intake paperwork. I did ask about developmental history questionnaire, I was told to just look at what they will send. But they told me it won't be very long, so unlikely to be a thing like your 180 page booklet.
 
I was sent ABAS-3 to complete along with the intake paperwork from the psychiatrist. The forms are pretty basic only asking some situational questions and recent symptoms.

Does anyone have a good scoring reference for ABAS-3? I'm actually curious myself.
 
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