First article on autistic inertia
I have finally written and submitted my first article on my inertia research. It hasn’t been reviewed yet, but for now I have uploaded it as a ‘preprint’ on PsyArXiv here: “No way out except from external intervention” first-hand accounts of autistic inertia. I’ve included the abstract at the bottom of this post. I’m putting a more accessible summary first.
Why did I do this research?
Autistic people talk about inertia a lot, but people who live and work with autistic people or write about autism don’t seem to even know this is a thing. If they’ve even noticed autistic people have problems doing things, they usually put it down to a lack of social motivation. No one has studied this specific problem before. I have quite severe inertia that causes huge problems in my life, and I know a lot of other people who have these problems, so I thought if no one else will then I will research it.
What did I do?
I talked to 32 autistic people in four groups at Autscape and two groups in text chat on Skype. I asked questions about the things they have trouble with, what it feels like, what makes it easier or harder, and what impact it has on their lives. Then I analysed the transcript of what they said for common themes. I made a theme diagram (and changed it a few dozen times) that ended up looking like this:
What that shows is that I found four general themes:
- Descriptions of inertia. Difficulty starting can’t be separated from difficulty stopping and changing tasks.
- Scaffolding. External structures that can help prop up actions when we can’t start them internally.
- Wellbeing. Physical and mental wellbeing affects how bad inertia is and is affected by inertia.
- The effect on activities, including all kinds of things they wanted or needed to do.
Why it matters
Each of those general themes had themes within it. The most important messages are:
- Inertia is a range of difficulties with starting, stopping and switching tasks at will and is not within the person’s control.
- There are at least two different things going on, which may be related and are made better or worse by how the person is doing in general:
- Executive function: organising and planning, difficulty finding the first step
- Motor initiation: feeling detached or physically unable to move (may be related to catatonia)
- These problems have a massive impact on autistic people’s lives. Some of the most important things were being able to take care of basic needs and maintaining relationships with others.
- There are a few things that can help or hinder:
- Having another person physically present, especially if they are doing a compatible activity nearby.
- Interruptions are very hard to recover from if trying to focus, but can be helpful if ‘stuck’ unable to start or stop doing something.
- Prompts to nudge someone along can be helpful, as can being needed to do a specific thing at a specific time and place, but demands and expectations can make things worse, so this is a fine line to tread.
- Routine and a nice rhythmic, structured, active but unstressful life can minimise problems.
Because of doing this research, I and other researchers have a better idea what we should be looking at next to better understand autistic inertia and how to help.
The article itself is very readable and non-technical, so do have a look here: https://psyarxiv.com/ahk6x.
This study, called for by autistic people and led by an autistic researcher, is the first to explore ‘autistic inertia’, a widespread and often debilitating difficulty initiating action. Previous research has considered initiation only in the context of social interaction or experimental conditions. This study is unique in considering difficulty initiating tasks of any type in real life settings, and by gathering qualitative data directly from autistic people. Four face-to-face and 2 online (text) focus groups were conducted with 32 autistic adults (19 female, 8 male, 5 other), aged 23-64 who were able to express their internal experiences in words. They articulate in detail the actions they have difficulty with, what makes it easier or harder to act, and the impact on their lives. Thematic analysis of the transcripts found four overarching themes: descriptions of inertia, scaffolding to support action, the influence of wellbeing, and the impact on day-to-day activities. Participants described difficulty starting, stopping and changing activities that was not within their conscious control. While difficulty with planning was common, a subset of participants described a profound impairment in initiating even simple actions more suggestive of a movement disorder. Prompting and compatible activity in the environment promoted action, while mental health difficulties and stress exacerbated difficulties. Inertia had pervasive effects on participants’ day-to-day activities and wellbeing. This overdue research opens the door to many areas of further investigation to better understand autistic inertia and effective support strategies.
Thank you for this work!! I have adhd, and when I was a teenager, three decades before I knew, I used to say I had inertia, because once I got going I couldn’t stop, and once I was stopped, I couldn’t get going. Seeing this described in the context of autism, which is also present in my family, is very enlightening for me.
Your description of this experience matches up profoundly with my own, and that of countless people I know through the adult adhd peer support community. This is clearly an area of overlap between our diagnoses, and I had no idea. I’m so excited to read your paper, so will try very hard not to keep a stopping to comment every two sentences.
A very interesting and worthwhile paper that I’m thinking of sending to a lot of colleagues and friends to say ‘this is me’. Difficulties in initiation rather than in ability to plan are my major struggles. Maybe this article will inspire quantitative trials of interventions or strategies.
Personally, lists and timers may help a little, but I’m wondering if meditating to practice control of focus could help more, and it is as participants described, easier working with and for others. One factor not mentioned: I find curiosity can bypass the stuck-ness, but not resolve it – resolving a question can be an impulse to get me out of bed when a task or appointment or self-interest or physical need cannot. I find myself researching around my answers a lot, which partly may be lack of confidence in their acceptability and my knowledge, but also the impulse to investigate that I associate with my autistic difference.
I’ve recently had a diagnosis of ADHD as well and found a couple of metaphors explaining similar ideas and possible strategies. Firstly, Jessica McCabe’s ‘motivation bridge’ that she describes in her YouTube video ‘ADHD and motivation’. (The terminology is a bit different in that it’s clear people are motivated to do something but lack required factors such as stimulation to initiate a step). Secondly Brendan Mahan’s ‘Wall of Awful’ (anxiety as barrier) also referred to by McCabe, which has various suggestions including music as a stimulus to action. I find up-beat but expected music can help a little, as well as caffeine (which has an effect on parts of the nucleus accumbens). An underlying idea for both autism and ADHD seems to be that there are many expected factors contributing to initiation: social, emotional/mood, cognitive, sensory, connative, physiological, which add together, but the difference is that the gap or wall or ‘cognitive threshold’ is larger than for neurotypical people. Discouraging social and emotional factors and lack of reinforcement are often greater for neurodivergent people, but those are more easily understood in everyday language than is the size of the threshold to overcome.
Finally, the paper mentions alexithymia but not a related characterisation of initiation impediments: anhedonia, possible lack of goal-achievement pleasure or pleasure in the activity, and a core feature of moderate depression. ADHD and parkinsonism have been mentioned and the most recent thing I saw on anhedonia, [Gorwood P. (2008). Neurobiological mechanisms of anhedonia] also implicates dopaminergic circuits. I’m waiting to discover if methylphenidate helps me.
Thank you for writing the article- it was actually really emotional for me to learn that other people experience the same things I do. I get stuck a lot and it’s one of the biggest problems in my life, but I’ve struggled with people, especially parents and teachers, believing that I’m choosing not to act. I’ve been called “defiant” as long as I can remember and it always felt really dehumanizing. My mom found your article, though, so she… sort of gets it now? She’s not always perfect about it, but it’s so validating just to have that basic level of belief in my internal struggle.
Like your other correspondent Ezra I found it emotional to understand that other people experience these things. So many of the experiences related in the paper are the same as mine. The failure to start tasks even with major negative/positive repercussions is a clear one and so damaging but with the movement thing it is mind-blowing to discover how common it likely is. There have been at least two occasions when I’ve become ‘stuck’ outdoors, unable to move for I’m not sure how long but on the recent occasion more than half an hour. Movement felt like a deep sea diver walking along the seabed alienated from surroundings, not able to hear very well or speak. I did manage to get home in the end but
The ‘impossibility’ of reaching for a drink of water when de-hydrated for example or leaving it painfully long or even too late before going the toilet is so familiar. Often I’m sat or lying down in an uncomfortable position and I ‘can’t’ change it and get cramp or my my knee locks and even the pain does not cause me to move.
I’m a middle-aged adult on a waiting list for an autism assessment but I self-identify.