How to fail the ADOS-2
by Eva Aldea
Image by Andrea Piacquadio for Pexels
The ADOS-2 is a semi-structured, standardized measure of communication, social interaction, play/imagination, and restricted/repetitive behaviours. The ADOS-2 Module 4 is used with individuals who have been referred because of a possible Autism Spectrum Disorder (ASD). It takes approximately 60 minutes to complete.
*
I arrive for an appointment with Ms Lemon. There is a buzzer and a large sign by the front door.
PLEASE PRESS THE NUMBER BY THE CLINICIAN YOU ARE SEEING TODAY
1. Dr White
2. Dr Brown
3. Dr Beige
4. Dr Pink
5.
6. Mr Grey
7.
8.
9. Miss Mauve
10.
11.
Is this part of the test? (it’s not a test)
I press 1. I am going to see Dr White next week. Dr White will make the diagnosis, once she has had the reports from various assessments.
“Yes?”
“I am here for an appointment with Ms Lemon.”
“This is Dr White’s office.”
“I know, but there isn’t…”
BZZZZZZT
I push open the door. Just inside, to the right as I come into a narrow corridor, door number 1 opens. A woman leans out.
“Go to room 11. On the top floor.”
“Sorry, there wasn’t… Sorry, is there a bathroom I could use?”
“Straight ahead.”
The narrow corridor ends in a door labelled W.C. There are two more doors on the right after door 1: doors 2 and 3. On the left is a staircase. I go to the loo, and I go up the staircase. One floor, two floors, three. My breath and pulse speed up. Is this part of the test? There is only one door on floor four. Door 11. It is an attic room under the eaves.
I knock on the door and a woman – Ms Lemon – lets me in and gestures to one of two armchairs, placed to face each other, with a small table between them by the wall. The room is small. There is a skylight above my chair and a floor-standing behind Ms. Lemon’s.
*
Tell me what this assessment might achieve for you?
This is a test. It’s not a test, it is an assessment. An observation. The woman opposite me in this small attic room is observing me. In particular, she is observing me in relation to my neurotype. I am here because I have been depressed and anxious all my life and now there is a possibility that I may be able to explain those feelings in a new way. A way that doesn’t mean I am broken, just different. I am here because I am pretty sure I have ADHD, and my ordinary psychiatrist has referred me for assessment. She suggested it may be worth having an assessment for ASD, too. Perhaps because I tend to some obsessive thinking.
I begin by explaining all this to Ms. Lemon, as she is the one assessing me today. As background to why I am here and what I think this assessment might achieve for me, I give her a potted history of my mental health. I am forty-seven so it’s a largish pot. How I have been on anti-depressants for a long time and suffered with fatigue for a long time. How being diagnosed with chronic fatigue syndrome led to trying new drugs which gave me more energy and having more energy made me do more things and doing more things made me recognize ADHD traits in the way my mind works. I mention I’ve had to switch those drugs because of unacceptable side effects. I go on to tell her a little about why I think I may have ADHD and perhaps ASD. That I am not so sure about the latter, but maybe. I tell her the story of the time I spent six months growing cannabis because the story is funny and also very typical of how I approach life and projects: all in, researching the shit out of the thing I’m interested in, doing something intensely, perfectly, obsessively. Until I stop. Although, I tell her, some intense interests persist, like dogs and dog behaviour. I don’t tell her about evolutionary theory and the variety of life, because it doesn’t come to my mind, and besides I’ve already told her enough, it’s only an hour-long session. I always talk too much.
*
Ms Lemon hands me a picture book without words and asks me to tell a story.
I am, as it happens, an expert in stories.
Every story has elements.
Every narrative is an account of connected events.
Every plot needs an inciting incident, every protagonist needs a test.
I’m reminded of the scene at the beginning of The Neverending Story, when Bastian is reading a magical book in the dusty school attic. I, too, often hid when I was in school, although there was no attic. I read many books where a boy or girl reads a book in hidden space and is somehow transported – in the book, in the attic, in the wardrobe – to meet their true purpose in life. I was that boy or girl reading the book, taken far away from reality.
“…and then the boy walks out of the forest guided by the strange creatures, which seem friendly, and in the distance, there is a castle, and quite a few people are walking towards him in front of the castle, and that feels a little bit threatening…”
Am I setting up tension in the plot or am I revealing my distrust of groups?
I turn the page.
“and, oh, now he’s suddenly on the ramparts, not sure how he got there, and there is a soldier, and in the background, there are some mountains, but wait, they’re not mountains, they’re one huge dragon…”
I think about how by telling a story I am telling another story. This is what we are doing here in this room under the eaves, Ms. Lemon and I, making a new narrative about me. I have connected the events of my life in one way, now I am re-connecting them in another. I try to second-guess what kind of story my story is telling Ms. Lemon. I guess wrong.
*
Previous work on story-telling ability in autism spectrum conditions (ASC) has found a pattern of relatively intact use of story grammar in ASC narratives; however, prior analysis has concentrated primarily on whether specific story components are included, rather than how they are included. The present study analyzes an existing narrative dataset, concentrating on the kind of information that individuals with and without high functioning autism or Asperger syndrome include about story elements such as setting, character, conflict, and resolution. This analysis showed that individuals with ASC are biased toward providing local over global details about each element, regardless of whether the element involved mental content. (Barnes JL, Baron-Cohen S. The big picture: storytelling ability in adults with autism spectrum conditions)
*
Do you enjoy mixing with people?
“Yes, but I can only do it for so long. Then I need to leave. Suddenly it’s just…” (I gesture with my palm down across my face)
It’s like a wall coming down?
“Yes, it is like a wall coming down.”
Do you enjoy informal social gatherings (say 4-10 people—a family gathering)?
“I prefer smaller groups. 2-4 people. Friends. I like parties but I can’t stay too long. As I said.” (I gesture again)
Do you like the informal, social gossip at such gatherings? Do you like the ‘small talk’?
How good are you at judging what to say or do in these settings?
“I don’t know. I used to think I was quite good at small talk, and I kind of liked it. I guess because everyone likes being good at things. I thought I knew what to say, but now I am not so sure. How do I know if my judgement is good or not? For example, I like to talk about dogs. I can talk a long time about dogs, especially dog behaviour. If people ask me about dogs I tell them, you know? If people ask how I trained my dog, for example, I will tell them how, in some detail. I used to think they were interested, that they asked because they wanted to know how to train their dos, but now I think maybe they are just being polite.
It’s essentially impossible to know if you are bad at judging something you have no feedback on. Thinking back, I may have overburdened people with information. Kept on talking. Perhaps I missed cues that they wanted to end the conversation. I also think I stand too close to people, because they move away. I try not to. But often I can’t hear them in a crowded room, so when they move away I have to move closer again, and we end up doing this weird little dance.
I used to think this was cultural. I have always been told I am direct and loud because I am foreign, but maybe it is because I am no good at judging what to say or do in social situations. Standing too close to people is not a feature of the cultures I was brought up in.
So, am I good at small talk? I think I am good at it because I do small talk. But now I’m thinking, is it “good” small talk? Am I judging correctly what to say when I talk small? And am I judging people’s responses correctly?
It’s funny because now I am re-framing a lot of things. I had an interview with your colleague the other day and she asked if I ever got into trouble at school being inattentive. And the answer is no. I didn’t get into trouble. But I daydreamed all the time. I didn’t pay much attention in school. I didn’t have to. When a teacher asked me the question I always knew the answer. Daydreaming was just what I did all the time. Still do, I guess. Now I realise it could be called disassociating. Is it not just thinking? Imagining? I am not sure what I am supposed to be associating with. The answers to these questions are really only part of the story, aren’t they?
Anyway, if I can’t understand when someone is giving me a cue that I am saying something wrong, then how do I know if I am good at small talk or not? What if, for example, I’m talking too much about dogs and not even noticing that the other person wants me to stop? Now I am being asked, I am starting to wonder.”
I have a dog. It’s not very well behaved. You could probably help me.
“I’m sure I could.”
This is an assessment of me, not of her dogs.
How has it been in the past – for example, what did you do during break-times at school?
Did you play with all the others, stick to a very small group, or just be on your own, avoiding people? (Were you a loner?)
“I was a loner. A breaktimes I used to go and hide in the school gardens and cry, or read.
Sometimes I had a friend for a while, but I was never in a group. The other children were not really interested in what I was interested in.”
What were you interested in?
“Reading.”
Did you have any hobbies or like doing other things? Sports or other activities?
“No.
Yes.
I was I was in a theatre group. I loved improvisation.
I didn’t do sports. My dad was overprotective.”
*
Ms. Lemon reaches into her briefcase and takes out two magazines, a science magazine and a fashion magazine. She hands them to me.
“Let’s take a break. I need to write up some notes. You can read these if you want.”
this is a test (it’s not a test) it’s definitely a test she is testing what I am going to do read the magazines or make conversation or maybe neither just stare into space if I read does it mean I am normal or should I make conversation no that would be odd just keeping on talking when she is writing taking notes pretending to take notes can I follow instructions I leaf through the magazines am I missing a cue to be invited to conversation was I meant to talk I read something utterly uninteresting about makeup snails in the science magazine are more my thing I make a comment to that effect something witty to break the silence but she doesn’t laugh it was a bad joke anyway maybe it is actually a break
*
Ms. Lemon asks me to imagine the bathroom sink at home is in front of me, imagine where the toothbrush is, and the toothpaste. She asks me to demonstrate how I would brush my teeth.
This is definitely a test.
I pick up the imaginary toothbrush and look around for the imaginary toothpaste (my bathroom shelf is very messy). There it is. I pick it up and unscrew its imaginary lid and squeeze out a little imaginary toothpaste on my imaginary toothbrush. I turn the imaginary tap on, passing the imaginary toothbrush with the imaginary toothpaste under the imaginary water stream and raise it to my mouth. Oh, I remember I should turn the tap off when brushing my teeth, to save water. I make a comment about this. I brush my teeth with the imaginary toothbrush, I spit imaginary spit into the imaginary sink.
“I hate brushing my teeth. I always rush it. I only brush my teeth for the minimum amount of time that I think is enough to clean them.”
Is it normal to not like brushing one’s teeth or does it indicate that I have a neurodevelopmental disorder?
*
Time is up, and more. An hour flies by when you are making up stories. But Ms Lemon has a final task for me before we finish. She hands me a transparent plastic bag with a load of stuff in it, rubber bands, plastic figurines, that sort of thing.
“Pick five items out of this bag and make up a story about them.”
I stick my hand in the bag and get a feather, a plastic palm-tree, a rubber ball, a toy aeroplane and a magnet. I am absolutely fucking exhausted. I don’t want to make up a story about these random objects, it’s like a parody of a writing workshop. I just want to go home. I make up some nonsense about Magnet and his friend Bird going on holiday and playing ball on the beach. I am not happy with the idea that the magnet and the bird are on an aeroplane, because a magnet would have hell passing through security and why would a bird take a flight, but I don’t say.
*
A couple of weeks later, Dr White explains before she gives me the diagnoses. It’s like she wants to let me down gently. She admits the diagnostic tools are crude. In order to get a diagnosis, one has to reach a certain threshold, a threshold of impairment in everyday functioning. One can be neurodivergent and not reach that threshold.
“You are definitely neurodivergent,” Dr White says. “You approach life in a different way than most people.”
The relief and the agony of being told by a professional that one is, in fact, weird.
The vindication and the lingering doubts.
Doesn’t everyone think this way?
Dr White gives me a diagnosis of ADHD. Dr White says I don’t reach the threshold for her to be able to diagnose me with ASD. A full report will be sent to me shortly.
*
Communication
You scored 3 in this domain (cut off 3)
Qualitative Impairments in Reciprocal Social Interaction
You scored 4 in this domain (cut off 6)
Total score = 7 (not consistent with a diagnosis of autism)
Eva frequently and freely offered some information about her own feelings, thoughts and experiences in the session: she talked about her travels, studies/career to date and new job (as a creative writing lecturer) and her recent book publication as well as her family and partner, and her passion for dogs/animals. And she did occasionally respond to subtle prompts to ask questions about the examiner's thoughts/feelings or experiences e.g. "what dog do you have?" "did you do the JET programme (in Japan)?". However, these questions about the other person were short lived.
Overall the social overtures and rapport in the session were mixed: generally Eva was engaging and entertaining individual, however at times the interaction became one sided as Eva shared a lot of detail or many aspects from her life including sexual dysfunction related to medication she was taking for 'chronic fatigue syndrome', attempting to grow her own cannabis (for depression) which came to an abrupt end due to a first terrible 'trip' resulting in high levels of anxiety and her strong understanding about animal psychology, which resulting in the session over-running and somewhat overwhelming in terms of (personal) information shared.
Eva did not display any behaviours of note in relation to sensory interests, hand/finger mannerisms or compulsions/rituals. There was no reference to any unusual topics other than the high level of detail about her interest in dogs.
*
I shouldn’t have talked about my mental health; I should have talked about dog behaviour.
That would have been more normal.
(I always talk too much about myself)
I should have told her the theories about how animal consciousness evolved.
That would have been less normal.
(I am always trying to talk less)
It’s not a test.
But I didn’t pass.
Eva Aldea (she/her) is a writer based in London. Her novel, Singapore, is published by Holland House Books (2023). Eva is writing dispatches from her work in progress on the Leaving Stockholm substack, and editing writers’ reflections on diagnoses on the website Dx: Diagnosis and Writing.
Find Eva on Instagram