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.