Most people that use the ADOS-2 would probably say that the D codes are the hardest to feel confident about coding, in particular, D1 and D2. In this blog post, we are going to reflect on information in D1 and consider examples of what would be coded here and what would not. Before we get going, I want to say that the D codes make everyone think, even very experienced clinicians. I also want to say that there is always room for different opinions in autism assessment, and the D codes spark considerable debate!
To code D1, we need to know:
- What this item is looking for, e.g., what “unusual sensory interests” and “sensory-seeking behaviours” refer to.
- What the descriptors for each of the codes listed for D1 mean.
- That we are coding the 5 senses: taste, touch, sight, smell and hearing, NOT proprioception.
That sounds straightforward. However, in reality, it is often anything but.
One of the biggest reasons why, is that the ADOS-2 is used with such a wide range of different people that it is not possible to make a definitive list of sensory interests and behaviours that code in D1 to be used as a checklist in assessments. I know, we all want that list, but sorry, you are more likely to win the lottery.
Many conditions have identifiable features that are the same in everyone, e.g., flu, measles. This is not the case in autism assessments. The DSM-5 lists core features identified by considerable research but unlike flu and measles, they vary hugely from person to person and do not look the same. This makes coding the ADOS-2 a challenge and means that clinicians need to have extensive knowledge and experience of autism, as well as knowing the ADOS-2 very well. On top of this, we all need to be coding the same things, in the same way. This is why it is so important to attend reliability meetings because the aim of these is to make sure we are all coding in line with the consensus (the consensus is coding agreed on by ADOS-2 trainers and research reliable clinicians). It is very easy to drift away from this.
What does the descriptor for D1 say and what does it mean?
“Rate the participant’s interest in or unusual behaviours associated with sensory aspects of toys or surroundings (e.g., sniffing, repetitive feeling of texture, licking, mouthing or biting, unusually strong interest in the repetition of certain sounds, unusual or prolonged visual examination).”
- The word unusual is key. We are coding unusual interests and/or behaviours because we are looking for evidence of sensory interests / behaviours that have been found to be highly correlated with autism. The ADOS-2 is NOT a sensory assessment.
- Many if not most people have some sensory interests and behaviours, but not all of these are unusual. D1 is not going to code these, e.g., stroking our hair or our arm, rubbing the side of your chair.
- D1 codes sniffing things, e.g., sniffing assessment resources, sniffing the examiner’s hair. These are unusual.
- It codes licking, mouthing and biting. For example, licking the foam pieces in the Construction task, licking the pin art toy, mouthing is not coded in Module 1, but mouthing the balls in free play would be coded in Module 2, mouthing action figures would be coded, biting toy plates.
- D1 does not code aversive responses to loud sounds (that codes in D4) but it codes interest in hearing certain sounds again and again, e.g., a child holding the bubble gun up to their ear to hear the sound that it makes several times – if they do this repeatedly, we have more evidence that their interest is sensory. We cannot be sure that this is sensory if it only happens once. It must be clear.
- It codes holding things up to your eyes to look at them very closely, e.g., the metal holographic disc, the toy fire engine; spinning items, such as the holographic disc or spinning pen, and putting your head very close to this or over the spinning item to watch it going round and round; peering closely at times. This needs to be clear – if it is brief and only happens once, it is not clear, but if it happens more than once, and / or it lasts for some time, you will be thinking about coding.
- The ADOS-2 looks for unusual sensory interests and behaviours, and it looks for patterns. For example, if someone rubs the table, or they rub the arm of their chair, this will not code. We all do this, it’s not unusual. However, if they often rub surfaces, and this seems like a pattern, this is more unusual and we will start thinking about capturing this in D1.
The ADOS-2 trains us all to notice details. We need to notice details, but we often end up being so good at noticing details that it makes it harder to tell which details code and which do not. We can get swamped by details and lose sight of thresholds, and over code.