Our next step in this year’s Autism Acceptance Week series is an exceirpt from, and commentary on, Episode 10 of Uniquely Human: The Podcast.
In this episode, Barry Prizant (author of Uniquely Human: the book) and Dave Finch discuss how autism is related to the notion of trust, and how to build trust.
I will rephrase a few ideas from the podcast and comment on them below. I also recommend listening to that podcast episode for more context, as well as the corresponding chapter in the book.
(Yesterday: the importance of autism advocacy.)
❦❦❦
To start, Barry quotes an unpublished manuscript by Michael John Carley from 2015:
I recently came to the conclusion that the opposite of anxiety isn’t calm; it’s trust: the ability to ward off the feelings of impending misfortune, betrayal, or personal slight, and believe that everything really will be OK. Too often, for many [autistic people], that sense of being unheard, and misunderstood, that very well-informed track record of non-spectrum people getting you wrong, leaves the option of trust at a relative distance.
❦❦❦
The central argument of this discussion is that the autistic mind often develops under constant strain (bordering on trauma) of over-stimulation, dysregulation as a result of misunderstood changes in its surroundings, combined with little acceptance or too few accommodations from the social environment with regards to the autistic needs. This induces extreme anxiety, on a continuous basis.
In order to survive, the autistic mind develops coping mechanisms of various sorts to stabilize (the perception of) the environment and make it more predictable: stimming, special interests, alone time, etc. These are merely coping mechanisms, and not cures: the underlying fear of the unpredictable, of further pain, remains. The coping mechanisms provide merely a temporary distraction.
This is how Barry Prizant, after Michael John Carley before him, can express the idea that “autism is a disability of trust”: an unability to trust that each temporary discomfort due to a change, or unforeseen circumstance, will be followed, eventually, by a recovery and a new state of normal.
❦❦❦
Barry and Dave then continue by discussing strategies to build trust with autistic individuals, from the perspective of the neurotypical folk around them.
Here is my rephrasing of the strategies discussed in the podcast, with a focus on how co-workers and managers can help an autistic individual on the workplace and generate trust:
acknowledge and work hard at understanding what a person is trying to communicate. If there is a breakdown, or a communication style that becomes difficult/different, this is a sign that the autistic person is trying to communicate something new or complex—and becoming impaired from doing so in a neurotypical way due to (temporary) dysregulation.
Take the time to listen, but also express explicitely you are listening: it often is not obvious. Provide opportunities to smear the communication over multiple interactions. Think of creative ways to communicate: ask to “show” if “tell” does not work.
practice shared control: when an autistic person is constantly under pressure to conform to expectations that come from “outside”—e.g. a job’s responsibility, social norms, etc.—they are more sensitive to this pressure and more at risk of becoming dysregulated.
The durable, research-based support that can stabilize this aspect is self-determination. Give the autistic person more agency by making them active participant in the development of their responsibilities. Ask them for suggestions as to which approach they would like to take. If necessary, point out why a choice is sub-optimal, even at the risk of “stating the obvious” (it may not be obvious to them), while remaining respectful. Let them course-correct on their own whenever possible.
acknowledge the person’s emotional state. Understand and acknowledge (explicitly) when a person seems dysregulated. If they are in pain, if they are currently struggling with their internal state, and you try to rush through (or ram through) their emotional turmoil, they will likely feel doubly overwhelmed and possibly shut down.
Avoid comments like “deal with it” or “get over it.” Instead, ask them how much time they need to recover and how you can help.
do not discredit or misjudge the autistic person’s viewpoint or argument because of your knowledge of their position on the spectrum. Especially so if they have entrusted you with that knowledge in the first place. Autism is not a disability that causes lack of judgement or intellectual limitations. Your lack of respect for their viewpoint will be experienced as a breach of trust, a betrayal, and feed into the anxiety cycle.
If you have a hard time understanding their viewpoint, ask them to clarify or rephrase in a different way. Simply stating that “you do not understand them” could be misunderstood as a veiled criticism that “you do not want to understand them because they are autistic”.
be dependable, reliable and clear. If you state that you are going to do something, follow through and actually do it. If circumstances change that require a change of strategy, explain why the change is occurring. If there is a time or duration scheduled in advance, stick to the schedule.
For clarity, just make sure that you are articulate and double-check that you have the person’s attention when you are communicating with them. When possible and reasonable, support discussions with written notes so that the information is shared on multiple media simultaneously. Give them some time to reflect on discussions or explanations before they can ask questions or request clarifications—in particular, soliciting questions immediately will not be fruitful.
do not mistake silence and/or lack of eye contact for lack of interest. An autistic person who is fidgeting during a meeting and perhaps looking away is not simply distracted and mentally absent. They may be hyper-focused on what is being discussed and unable to simultaneously direct their body language towards the conversation. If you mistakenly assume they are not engaged, and ignore them as a result, they will feel disrespected and this will also reinforce a cycle of anxiety.
Simply do not gauge interest or participation by looking at attitude alone. Ask the person explicitly if they can think of something to contribute, or improve upon. Suggest they take notes, possibly later, if they are more comfortable reflecting in writing.
if they become dysregulated, or display behaviors that are unusual, ask them why: what is the cause of what affects them. Your primary instinct might be to express your discomfort at their dysregulation or behavior and possibly coerce them to stop the behavior. This may appear to work but will really cause a spike in anxiety and also a thickening of their social mask, which will make all future interactions more difficult. Instead, ignore your primary instinct, acknowledge the dysregulation (as per the point further above), and engage a discussion of what caused the dysregulation in the first place.
Give them a chance to explain what happened, address that, and then negotiate alternate behaviors or ways to communicate discomfort in the future.
avoid over-prompting, physically or verbally. Seeking too much participation, either to shared activities or conversations, coerces the person into a behavior they may not be comfortable with. It removes their agency (see point above). It may cause over-stimulation. It removes their choice to approach the situation differently, possibly in a more quiet fashion. Any kind of over-prompting will induce anxiety and possibly dysregulation.
If you need to achieve certain outcomes on a narrow timeline, and/or if you are getting impatient, ask permission to the person beforehand to be more directing or authoritative. This gives them a chance to prepare mentally and emotionally for that kind of interaction with you, on a temporary basis.
approach their support needs as a team effort. Chances are an autistic individual has a pretty good idea of the type of support they need, and the various ways their co-workers can support them.
Give them an opportunity to share a plan or strategies with their team to support their autistic needs, and then coordinate collective buy-in into these strategies from the entire team.
provide advance notice for activities, changes or events that may be disruptive. A countdown (i.e. multiple periodic reminders that the disruption is upcoming) works best, since it may be difficult to keep track of an upcoming event further away in the future in a complex environment. Talk about the likely consequences of the disruption. There is no need to “smoothen out” the disruption or minimize it; what matters is to make it clear it is going to happen and what will stem from it, to make it predictable.
provide safety nets. Make it clear from the get-go how someone can rely on you when something unexpected happens, or some other structure they rely on breaks down. Provide alternative contact persons that can provide other aspects of the safety net.
Sometimes the appropriate safety net can be a safe space or a safe activity. Create an advance agreement / green light that the person can call into their safety net if they encounter a situation they cannot deal with themselves or in a timely manner.
celebrate successes mindfully. When a person takes a risk, achieves something that wasn’t expected, or develops an unexpected skill, talk about it. Beyond a standardized social or monetary reward, reflect on how the achievement was meaningful for that person, how they feel about it and what they learned from it.
Avoid simple phrases like “good job,” which will be perceived as dismissive and reductionary. Create a space for a conversation about the achievement, and come to it deliberately and mindfully.
❦❦❦
Why is all this important? As Barry explains:
When you’re with a person whom you trust, you feel more comfortable taking risks. If the bar is raised for you, and you feel comfortable, you’re going to reach for that. But you’re not going to do that for someone whom you don’t trust.
Many autistic adults on the workplace suffer from PTSD from continuous anxiety throughout their lives. This requires extra care from managers to build trust with them, to reduce this anxiety.
❦❦❦
To wrap up this article, let me share some personal reactions to this content by Barry Prizant:
I can personally vouch for the effectiveness of the strategies enumerated above. They have helped me; they have helped other folk whom I know.
This really ought to be “management 101.” Autism has been known and reasonably understood since the 1990s. No professional manager today who is not retired yet can pretend that it is “too new” for them.
(Conversely, if you are reading this and you feel like your manager is not up to speed on this topic, talk to them or their own manager and suggest complementary training. They may not know how to do this yet and this can be learned.)
For what it is worth, at some technology start-up that I have been working with, the managers and team organizations scored between 1/12 and 7/12 on their ability to apply the strategies outlined above, with a skew towards the lower end depending on manager/team.
After chatting with folk in my professional network, this range and skew seem prevalent throughout the industry. There is ample room for improvement.
Everyone would benefit from these strategies, not just autistic folk. Nobody would ever complain being treated in the same way an autistic person needs to be treated. In fact, in many cases, neurotypical folk even report an increase in their quality of life from receiving this type of support, one that they did not expect or dare to request.
Feel free to reach out to me to share how these strategies have helped you in the past, or if you have additional ideas of what to teach to co-workers and managers.