Anyone been for an ADOS test as an adult?

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So after much waiting my assessment is a week today.
I’ve been really worried about such things as what it entails and if I’m going to be diagnosed, so what I was wondering was:

Has anyone here been for an ADOS assessment as an adult?

I’d like to know a bit about what to expect, but it seems like there’s nothing about it on the internet as you have to pay loads of money to get the test papers.

It’s through the NHS, and I am pretty sure they still use DSM IV, as most of the world has moved on to DSM V I’ve read an awful lot about that but can’t find much about the older scale.

Thanks in advance for any replies!

One thing in particular that’s getting to me is everywhere I read about ASD suggests that Aspies aren’t very good with understanding characters motives in films or books, and also will be bad at making up stories.

One of my special interests has always been film and tv, and from a fairly early age I’ve always been keen to know how things like this are made.
So as I’ve grown up I’ve been to college and university studying film-making, and I could argue that no-one is good at making up stories as there are only 9 types of stories that pretty much anything can fit into. If you look hard enough you can argue that nothing is original, just the same but different.

Also I don’t agree with the lack of interest in fiction thing I’ve read about.
Personally, because of my issues with friendships and people, I’ve been very into things that may be perceived as fiction (as an example, Star Wars)

This is really winding me up because I feel I need to be 100% prepared as I ALWAYS forget stuff when I see doctors until afterwards and I’m worried I’ll forget something important any to my diagnosis...

ADOS-2 Module 4 is the ADOS instrument used to assess adults and adolescents for autism. It is quite good.

But, it can seem silly or even insulting during the assessment process. Some of the task tests include putting pieces of a puzzle together, another is narrating a picture book, and still another has you using toys to narrate a story. But don't worry, they didn't mistake you for a child. They are simply trying to determine your ability to imagine (I largely failed that one; I was too pedantic) or figure out your ability to complete instructions. This helps them rule out other "non-autism" diagnoses which can appear to be similar.

The more interesting parts of the assessment include a few discussions about your life and what can make you sad, angry or confused. You can be questioned about your understanding of friendship and marriage, for example.

It is a good idea to make a list of your own recognized autistic behaviors and characteristics. This lets your diagnosticians focus in on concerns you have related to your own life. Be ready to describe your work life, your friendships, your family, your educators, and people who have insulted or ridiculed you.

The assessment is lengthy, but you get some breaks to relax (take a Toblerone with you to help you through it all). At the end of it all, the diagnostician(s) are encouraged to tell you the immediate results of the tests. A written assessment will be mailed to you in two to three weeks. It includes your various test scores, what the scores mean and a detailed description of your diagnosis.

I would love to visit North Wales and, especially, Dolwyddelan Castle where one of my Welsh ancestors might have lived.

Good luck!

Thanks for you reply, it’s a big help.

As I’ve been doing nothing but research and making notes for the last 9 months, I’ve gotten a bit bored of it in the last month or so thinking ‘there’s no point making anymore notes’ but now I realise I don’t have enough on stuff such as bullying and why it happened.

I am now panicking making new notes, but it feels useful so thanks again.

One thing that I have realised that has only just dawned on me is that my partner is coming with me to the assessment and I don’t know if I’ll be able to fully explain myself when she is there, I’ve spent my whole life trying to appear normal that I’m afraid I’ll reveal too much about myself and it will change her opinion of me.
Or absolute worst case scenario is that I manage to get across my personal demons and the assessment shows I don’t have AS...

I’m can’t wait to get this assessment out of the way. It feels like I’ve been waiting my whole life for this, I just hope it goes the way I’m expecting it to.

Wales is a very beautiful place, we have a lot of castles for keeping those damn English out!

You are quite welcome!


I felt the same way before my assessment. But, realize that you and your diagnostician can't address all your notes. The notes exist simply to remind you of some things you hope to address.


Having your partner attend is a good idea. She can share some ideas of her own and, hopefully, keep you calm and on track. I, too, learned to mask quite well, and worried if it might distract from some of my private characteristics which should probably be shared. But, diagnosticians are good at distinguishing between characteristics of children and adults with autism. At my assessment, one of my diagnosticians said that she couldn't see any repetitive and restrictive behaviors. I replied that my RRBs include swiping my hands on table tops (or my pants in the absence of a table top near me); the cool, smooth texture is calming to me. By the time my written assessment arrived a couple weeks later, both my diagnosticians increased my RRB score by a point to reflect my swiping.


It seems to me that you have your evidence at hand, your partner can help you with reminders, and you know more about yourself than anyone else. So, you appear ready to go! At this point, stay calm, relax as best you can, and intentionally distract yourself the day before your assessment with a movie or exercise.


Hehe. As a Celtic mutt of sorts (ancestors from all seven nations), I appreciate keeping the English (at least its government) at a distance ... even from the U.S. government.

I was assessed recently by the NHS in England (Cumbria). I don't know whether the assessment interviews are the same in England and Wales or whether age affects how the assessment is carried out. I am in my mid fifties.

There were no actual tests of any sort during my assessment. They had sent me a lot of paperwork to fill in prior to the assessment including the AQ, EQ and SQ and a lengthy more general questionnaire. I also sent them a twelve page report I had produced myself (twelve pages was the short version) which they said was very helpful.

The assessment lasted about three hours and consisted entirely of interviews which was pretty exhausting. For about two hours my ex partner was present. She was then interviewed separately by a nurse for the final hour whilst the psychologist spoke to me alone. I took along a lot of additional notes to refer to during the interviews as I knew my brain would go completely blank every time I was asked something.

They did not give me any diagnosis on the day as they had to discuss my case with the multi-disciplinary team. I was given my diagnosis at a follow up appointment about six weeks later.

The official diagnosis on the report says Autism Spectrum Condition but in the notes for my GP it asks them to record the diagnosis as Asperger's Syndrome on my medical record.

(Edited to add - the DSM V citeria were used)

Thanks for the reply Sandpiper.
Did the NHS send you for a private diagnosis?
To my knowledge the NHS is still on DSM IV but private places in the UK are on DSM V.
What makes me think this is that Aspergers has gone from DSM V as it’s lumped into The ASD category, but a lot of places will still say ‘yeah we mean Aspergers’ simply because of the wealth of information available that exists under that name.

I was thinking about biting the bullet and spending £700 on a private diagnosis awhile back - one of the councillors mid-informed me that there was a four year waiting list for diagnosis, but the next time I saw the psychologist he said this wasn’t the case and that he could do it in his next available hour-long slot.

That’s another thing that has me concerned - a lot of people and places say that diagnosis takes a couple of hours, yet I’m supposed to having mine in an hour?
I have already submitted 80 A4 pages of notes to the psychiatrist, that was by no means complete - just what I managed to get into some sort of document that made sense. I’ve also made loads more notes since then to take with me next week.
I guess my main concern is that this assessment on Tuesday will turn out to be some sort of pre-assessment and I’ll end up having to wait months again...
I’ve been dying to mention it to the one or two friends I think would understand and / or benefit from knowing what I’m going through (and maybe explain to them why I am the way I am) but I can’t bring myself to do it as until I get a diagnosis I’ll either feel like a fake, or if I don’t get diagnosed, a lying weirdo

My partner has said if I don’t get the diagnosis then we can pursue it further, possibly going back down the private route.

Thanks again for your reply.

The entire process was through the NHS. The adult assessment service in Cumbria has only very recently been set up so maybe that is why they are using the DSM V criteria.

^^Similar here on the Bradford/Airedale side of West Yorkshire. I remember the psychologist specifically mentioning that sensory sensitivities had only recently been added to the traits they were looking for, and my diagnosis is ASC. The local "neurological development team", as it is called, is nominally an NHS unit, but it is actually (under)funded by the local authority - presumably as part of their provision for the Autism Act of 2009.

There were no obvious "tests" as such when I was assessed, just three to four hours of interviews, which were done at three separate appointments spread over a couple of months. However, the appointment timing may have been because the psychologist decided to involve their occupational therapist regarding my executive functioning.

I get the impression from talking on other UK-based forums that the assessment process is not particularly standardised across different NHS trusts. I have heard of some people who were sent by the NHS to private clinics where they were given a diagnosis in a single consultation lasting less than an hour, but others have reported assessments which included all sorts of tests of dexterity and language skills. Partly that may be because ADOS is only really a "framework" saying what needs to be looked for - it doesn't specify precisely what tests or techniques should be used to do this.

Some clinicians use a pre-assessment series of screening tests to create a map of sorts in pursuing a diagnosis. This makes some sense, but a well-prepared client like yourself should present with enough evidence (including one or more screening scores) to make a pre-assessment redundant.

I felt the same way about my family and friends who might dismiss a non-diagnosis as proof that there is "no there, there." But, right before my assessment, I learned about differential diagnoses (such as Avoidant Personality Disorder which can be so similar to autism that they are sometimes confused and conflated). It might be a good idea to ask your diagnostician about your possible differential diagnoses. Doing this would let your diagnostician know that you understand how this might affect your preferred diagnosis, and might encourage more exacting considerations. As for family and friends, it wouldn't hurt to disclose after you have confirmed you diagnosis. In fact, I didn't disclose my diagnosis to anyone until after I was told that it was confirmed. If you are diagnosed with autism or something else, at least you will have the advantage of certain knowledge.

I did write a massive reply but I seem to have lost it somehow!

Anyway, basically:

Personality Disorders are how I got to where I am now.
I won’t go into detail but let’s just say I’ve always struggled socially and I’ve just about managed to pass off as normal to get by.
About a year and a half ago, a friend of a friend posted on Facebook that they had been diagnosed with Borderline Personality Disorder. I looked into it and I started seeing things put into words that I hadn’t known I wanted putting into words (if that makes sense!) and I started reading about the other PD’s.

Avoidant Personality Disorder was the one that explained my social issues and I managed to get myself into the mental health system. Basically I got to see a psychiatrist 9 months ago and during a hour and a half session he asked if I’d ever been tested for autism, and did the AQ 10 year and said that I did place on the autistic spectrum.
He then went on to diagnose me with Avoidant Personality Disorder, and I went home and later thought ‘why did he mention autism?’
That sparked off the last 9 months of constant reasearch into autism, and specifically Aspergers. The more I read the more I related, and there was also some sensory things that I had never even considered to be not normal before - stuff I’d forgotten about in childhood that was relevant.
I’ve been convinced ever since and my partner seems to think it makes sense, as I am useless emotionally in our relationship.

I have done my homework, I just think that for various reasons, I’m worried he’s going to want to stick with the AvPD diagnosis.

I’ve been telling myself that I wouldn’t have got an appointment for this autism assessment if they didn’t think there was something to it.


Again, thanks for the replies!

The big difference between ASD and AvPD is that ASD manifests in early childhood years while AvPD manifests in adolescent years. If your ASD manifested in early childhood (and your AvPD manifested in adolescence after years of typical development), I would ask your diagnostician to reconsider the AvPD diagnosis and diagnose ASD instead.

My assessor said I had set a record with the twenty odd pages of notes I sent in advance of the face to face assessment....

That is about what my page count was, too.

It's not at all frightening when you do it. I found the IQ test taxing. I still don't realy know what to do next though. Mine was a few months ago.

I'm planning to go private in the UK, and I think they use the ICD.

How confusing if everyone's using different clinical manuals!