As I have interacted with increasing numbers of autistic people, much of what I have learned has taken me a bit by surprise. Yet, the effects of my heeding these lessons and working counter to my erroneous instincts in my relationships with my autistic friends, family members and coworkers have been amazing.
Five key issues that have radically changed how I think about and approach my relationships with autistic people are understanding that:
- Empathy struggles go both ways.
- Sensory differences can lead to trauma.
- Failure to comply to a request does not equate to being oppositional.
- Honoring their ‘no’ is critical.
- Inability to speak does not imply low intelligence.
This article is a reflection of my own journey, and my own learnings and perceptions, based on my understanding gleaned from input and reading from autistic and neurotypical people alike. As with all such things, I am a work in progress in this area. Throughout this article are links to useful clarifying articles from research, from the perspective of educators and therapists, and most importantly, from autistic people themselves. These links can be used to inform your own learning, direct from the source.
Empathy struggles go both ways.
In his original paper on the double empathy problem, Damian Milton proposes that the difficulties in understanding and communication between neurotypical people and autistic people go both ways. Basically, the greater the mismatch two people have in culture, communication style, way of thinking, etc – the more likely there will be miscommunication and misunderstanding between them. This difficulty is mutual and goes both ways.
There is a good summary of double empathy from a layman’s perspective in this article from Spectrum, and one from the autistic perspective in this article from Reframing Autism. The fact that communication issues are really related to neurotype differences (as opposed to being a deficit related to one neurotype or the other) is examined in this study on autistic peer-to-peer information transfer.
What this means for me is that I change my mindset about what to do when I am getting frustrated due to communication struggles with someone. If I think that a person is struggling to understand me and what I am communicating, it is very likely that I am not understanding them and what they are communicating also. I can proceed with the notion that they are likely getting just as frustrated as I am. Rather than feeding my frustration, I choose to start to do things like asking open ended question to try to figure out where the communication mismatch lies.
Sensory differences can lead to trauma.
Autistic people frequently have sensory differences. These sensory differences include not only the five senses we normally think of (vision, hearing, touch, taste, smell), but also vestibular (balance), proprioception (awareness of the position and movement of your body) and interoception (sensing what is going on inside your body). These senses are described in more detail in this article. Judy Endow gives a good explanation of sensory differences from the perspective of an autistic person.
What this tells me is that autistic people sense the world differently from me. What is pleasing to me may be torment to them. Sensory differences are not something to brush off or ignore, especially given that one way these differences manifest is hypersensitivity to sensory input. Hypersensitivity makes sensory overload more likely. Many common experiences are very difficult for people who tend to experience sensory overload. A recent survey of autistic people noted that sensory challenge and overload are most problematic in such everyday places as supermarkets, restaurants, main streets, public transport and doctor’s offices.
Sensory overload itself can cause trauma, especially in situations where the person is exposed to the same kind of sensory overload repeatedly. Terra Vance describes sensory trauma in this NeuroClastic article. Therefore, expecting an autistic person who struggles in this area to learn to cope quietly with a sensory barrage does them significant harm in the long-term. Another thing to consider here is that many autistic people experience a lot of trauma and trauma also affects your sensory system, so there is a bad feedback loop that can develop.
What this means for me is that I pay close attention to the autistic people I am with and the environment that we are in. I do well when I try to understand a person’s sensory issues and adapt the environment and my expectations to minimize their sensory stressors. I may meet them on a quieter street, or in an outdoor cafe instead of on a main street in a busy restaurant. I try to understand the differences in body language and what are their signals for when they are indicating discomfort. When they indicate that they want to move to get away from a bad sensory situation I listen and do my best to work with their request.
Failure to comply to a request does not equate to being oppositional.
When I ask someone to do something and they don’t do what I asked, it is tempting to jump to the conclusion that they are being oppositional. However, this is not always the case.
With some people, phrasing something as a demand can cause a spike in anxiety (or even a panic attack) that prevents the person from being able to fulfill the demand. This happens even when they make a demand on themselves, like make themselves a checklist of things they need to do. This is called Pathological Demand Avoidance, or PDA. PDA was described originally in this article. In the PDA information sheet, people with PDA describe their experience as “a neurological tug of war between brain, heart and body”.
When a person is showing signs of anxiety when I need them to do something, there are a few strategies that I lean on. One strategy that is useful when I have a bit of flexibility is to use declarative language. That is, I will state the thing that needs to be done and leave them the opportunity to volunteer to do it. A second, related strategy is to move towards a more collaborative approach to the planning process, where they are participating and have more control. This strategy requires starting the whole process a bit earlier to leave room for the collaboration, but also tends to produce plans that are more useful in the long run.
Another situation that looks like failure to comply to a request happens when a person struggles with executive function, as described in this article. The person does not comply with the request because they are lacking the skills and emotional energy to plan and execute the requested task. Executive function includes the ability to make a plan, start doing the plan, remember all the steps in the plan, and continue executing the plan until the task is complete. Executive functioning challenges are more of a lagging skill problem. When a person has weak executive function, they are challenged with one or more of the tasks of planning, organization, remembering key pieces of information, and shifting between tasks easily. When a person is anxious or under stress, their executive functioning capabilities may decline. Cynthia Kim does a deep dive into autism, executive function, and her strategies to manage it in this series of blog posts.
One important thing I keep in mind when I interact with someone who is both a very literal thinker and also a person who has weaker executive functioning skills is to keep any directions I give them very concrete and unambiguous. Also, slower and more durable methods of communication help, such as emailing requests and directions, writing things down, or managing tasks on a Kanban board tend to work better. It helps to provide more concrete deadlines as to when the request needs to be completed. Often, people with executive function issues also are not particularly good at asking for help or clarification, so taking the extra time to check in, see whether they need anything, and check that they are clear on the next steps can facilitate their completing the task satisfactorily.
Honoring their ‘no’ is critical.
When a person is constantly told that their instincts are bad and they need to look to other authorities for how to behave, they do not have the opportunity to learn when and how to say ‘no’. Even the most communication-challenged autistic people can clearly indicate ‘no’ and ‘enough’ in some way, and it is important for us to listen and respond appropriately.
Many of the autism therapies recommended today are centered around the notion of compliance. These therapies include ones that focus on behavioral change, such as Applied Behavior Analysis. Behavioral therapies operate on the principle that if you change a person’s behavior, you can effect deeper changes in how their mind works. While these therapies may improve surface behavior in some circumstances, they also teach the person that their mind does not work correctly and they need to look to others to understand what is ‘correct’ behavior in a situation.
In light of the previous three points in this article, what does it mean for someone to evaluate someone else’s behavior and then proceed under the assumption that their evaluation is correct? Is this approach effective?
First, when an autistic person says ‘no’, I may have very little empathy or understanding of what is bringing them to that point, due to the double empathy problem. I may be unaware of sensory issues or other traumatizing factors, both because I do not experience the sensory environment in the same way and because their lack of interoception may mean they are unable to describe the pain the sensory environment is causing them. The reason a child may not be following directions may be related to anxiety or lagging skills, neither of which is something they can control easily (even if they thought what I was asking was reasonable).
Behavioral therapies center around compliance to some behavior goals that are usually not set with the consent of the person who is the subject of the therapy. That is, behavioral goals are usually set by parents, school personnel, and/or therapists. The autistic person, often a child, is not given the opportunity to provide input. Yet, from double empathy, we see that the parents often do not understand the concerns of the child, the function the behavior has in their lives, and/or the underlying frustrations that the child may be experiencing because they can’t comply. At the same time, the autistic person may not understand the function of the behavior being taught or the concerns of the parents or therapists that are leading them to try to adjust their behavior. It is only when both sides understand each other that it is really possible to define a goal that addresses the root of the ‘challenging behavior’, and if so, whether a particular approach has any chance of working in any durable or generalizable sense. That is, the often-missing input from the person receiving the therapy actually is key to evaluating the likelihood of its success.
A second reason we need to honor their ‘no’ has to do with the dangers of reinforcing a fawning response in an unsafe situation. When an autistic person appears calm and compliant, there is a very likely possibility that their decision to comply and squash their natural emotions seems from a psychological perspective like the safest thing for them to do at the moment. Their fear of imposed consequences is stronger than their natural desire for self-protection. That is, compliance often comes from a natural fawning response to fear and anxiety. This Medium article looks at fawning from the perspective of the person who has internalized a fawning behavior. Neurodivergent Teacher has a good article on how to tell actual calm from fawning compliance in this Facebook post.
If we do not listen, the consequence is that they learn to disregard their inner voice that says that they are in a dangerous situation. This happens because parents, therapists, friends and coworkers do not recognize that things that appear safe and normal to them may actually be unsafe and traumatizing to an autistic person. Insisting that a person should invalidate their own perception of safety because it is flawed or incorrect sets them up for grooming and abuse in their adult life. OldLady with Autism gives a much deeper and more accurate description of this in her blog.
One key takeaway I have from this is for me to operate under the assumption that each person has their own areas of comfort and discomfort, of safety and danger. Trying to force a ‘solution’ on someone that makes sense to me but seems unsafe to them is both useless and counterproductive. When I am trying to navigate a challenging situation with them, the solution needs to take everyone’s concerns to heart. A solution works best when everyone agrees to it, everyone thinks the solution will be effective, and everyone thinks the approach is feasible.
A second takeaway comes from the fact that I am by nature a person who offers hugs and touch for comfort, but I have learned to ask first. When a person says no, I honor that no. When a person indicates that they want to leave a conversation, I exit the conversation, even if I think I have more to say. More generally, I give the other person in a conversation a lot more leeway to control the flow of the conversation and our interaction than I did previously. This is a work in progress, however. Old habits die hard.
Inability to speak does not imply low intelligence.
Last but not least, I have developed a great respect for the non-speakers in our midst. Our natural thinking leads us to the mistaken conclusion that a nonspeaking person is not intelligent. This misconception is reinforced if the person does things like shout randomly or say seemingly irrelevant words over and over. Yet, these kinds of behaviors are associated not with low intelligence, but with apraxia (not being able to execute purposeful motor movements) and motor disinhibition (uncontrolled movements). Intelligence tests that take being able to speak into account demonstrate that people with apraxia have roughly the same intelligence distribution of those who speak. The problem is not in their innate ability to think and reason but in the disconnect between their brain and their body, as described for instance in this Spectrum article. Recent studies have shown that methods such as Facilitated Communication and Rapid Prompting Method enable communication and unlock their ability to express what they think.
Over the last several years, I have been fascinated with the writings of nonspeaking autistic people. Last year, I wrote a Medium article on the things I had learned from reading their writings. I encourage anyone, especially those who interact with nonspeaking adults or children, to read their writing – I have found it eye-opening.
One key lesson I have learned with respect to the non-speakers around me is to presume competence, my gut reactions notwithstanding. When I am interacting with a nonspeaking person, I assume that they fully understand what I am saying. I assume that they are working on responding intelligently, even when their efforts do not succeed. I also have been working on actual understanding. As I said earlier, most nonspeaking people I have met have been pretty good at conveying things like ‘no’ and ‘enough’ – sometimes very cleverly. Communication for them takes so much work and creativity that I see it as very important that I try to put forward my best efforts to try to understand what they are trying to communicate.
This lesson specifically applies when I interact with people who use AAC (Augmentative and Alternative Communication). AAC communication is slower but it greatly expands the non speaker’s ability to communicate effectively. Taking time to listen at a slower pace is valuable and educational. To have a conversation, though, I also need to slow down to their communication speed. Sometimes it helps for me to communicate using a slower method as well, such as email or online chat. When I use a slower method to communicate, I am not as tempted to interrupt, talk over them, or try to finish their sentences.
A second takeaway I have is that I think of how frustrating it must be to be a non-speaker. Imagine being in a position where you have so much to say, where you can explain something that may make things so much easier, when you see solutions to problems clearly in your head – yet you are unable to communicate them. Imagine being treated as stupid and incompetent when your mind is functioning quite well, and understands clearly what it means to be treated in a demeaning way due to presumed incompetence. Imagine being abused and being unable to communicate that to anyone. I cannot really imagine this, but it seems like such a hard place to be. I do well when I work to help with communication, find those points of connection, and just be there with them in their journey.
Wrapping Up …
Each one of the insights I have mentioned here have changed the way that I see and interact with the autistic people around me in one or more significant ways. None of these things I learned were intuitive or obvious to me at the time, though they are clear in hindsight. The net effect has been that the autistic people, for the most part, tell me that they see me as being more supportive, more connecting, and more empathetic. I see us more now as all being humans on this earth, each of us having our own strengths and challenges. And as Chris Bonnello taught me, things go much better when we all can play to our strengths.
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