A little bit about me
As an autistic person, my experience of training, becoming a therapist and being a client has, at times, felt like an uphill battle. I struggled to both express my needs but equally battled through various types of therapy that left me feeling like I was the problem. “Therapy just doesn’t work on me”.
Discovering I was both autistic and ADHD (attention deficit and hyperactivity disorder) late in life brought about a level of acceptance of why things didn’t quite work for me but also led me down a path of what might.
I will say that if you have met one autistic person, you have simply met one autistic person, but I hope my personal experiences of working with autistic people and being autistic may help in understanding how to make some simple adaptations to support autistic clients in therapy.
Autistic people tend to have monotropic minds; monotropism is an autistic theory originating in the 90s (Murray, Lawson, Lesser) which explains the differences between autistic and non-autistic people regarding focused attention. The world tends to operate in a polytropic way, so how does that impact autistic people?
Autistic people can focus on one or a few things in greater detail, but switching tasks, changing environments or a shift in attention can be difficult. Pushing a monotropic mind to do any of these things (enter a polytropic environment or situation) can be very stressful and overwhelming. It is best not to add more tasks or demands to an already focused monotropic mind and to allow more time for change, i.e., if the client is fully engaged in an art making activity in therapy and you ask a series of questions.
Therapies are generally designed around the predominant (or neurotypical) neurotype (Kelly and Farahar; 2021). The NICE guidelines suggest that cognitive behavioural therapy (CBT) and related therapies should be adapted to be appropriate for Autistic individuals on a case-by-case basis, but do not offer guidelines as to how to make the adaptations or what that might look like.
This means that psychological therapies start from the position that there is one correct way of experiencing the world when autistic people do not think or experience the world in the same way as someone who is not autistic.
Autism is often described as a spectrum, but it’s best not to think of it as linear; you are not more or less autistic (and no, we are not ALL a little bit autistic). Autistic people differ in autistic features they may present, and that can change over time or in different environments, e.g., I am more comfortable in a familiar environment and with people I know well. In these environments, I know I can be authentically autistic; in other environments, particularly the unfamiliar, I may present very differently.
Sometimes I speak too much and too fast, and sometimes I cannot speak at all, both experiences can feel very overwhelming but also very draining. For that reason, I would describe autism as a dynamic disability as it can fluctuate depending on external factors. This means I may be capable of doing something one day but unable to do the same thing on a different day.
Due to delayed processing problems, I can, at times, look unphased in the moment, and this can look like a lack of response to what has just been said or what has occurred. This can look like a lack of empathy as my brain tries to process things. I may be able to give responses on ‘auto pilot’ triggered by memories, and I may also be able to repeat back what's been said but still not have processed the meaning.
What happens during this process at times is people often assume I have not understood what has just been said, so they repeat what they have said, but this just interrupts the process; all I need is time and space.
I have, at times, also found that people can infantilize me, they repeat what they have said in simpler language. I may need longer time to process information due to repeated interruptions so even ‘dumbing things down’ will not help in these moments. I have been known to carry on a conversation six hours later to confused looking faces but that’s probably when I finally process the information, and to me, it’s a continuation of the same conversation.
Autistic ‘lack of empathy'
I have been described as ‘bossy’ ‘rude’ ‘aloof’ etc. but my way of communication is simply different (I'd argue more effective, it's direct and leaves no space for ambiguity). Most importantly, due to my tone and at times, my facial expressions, my communication is often misinterpreted, e.g., I roll my eyes when I am processing information (which is why I used to get myself into no end of trouble as a teenager).
A lot of research on autistic ‘social issues’ has focused on trying to clarify and detect an apparent lack of empathy inside autistic brains and minds with very mixed results, some scientists concluded that autistic people feel too much empathy rather than too little. Damian Milton’s double empathy framework - emphasises how communication and social encounters are always things that happen between people.
The DSM-5 diagnostic criteria for autism emphasize ‘persistent deficits in social communication and social interaction’ but recent studies demonstrate that autistic people have a distinct mode of communication. I love being with other autistic people, there are usually NO communication issues, Milton’s double empathy framework describes a mismatch in communication between autistic people and those who are not autistic.
It suggests that autistic people are often misunderstood, misinterpreted, misrepresented, and mistreated by non-autistic peers, researchers and clinicians and may have difficulty fitting into society not just because they misunderstand others but also because they are misunderstood by others (Milton 2012).
Executive functioning is the cognitive process that help us regulate, control, and manage thoughts and actions, it is related to cognitive functioning and affects as many as 80% of autistic people. It means that autistic people may have difficulties managing time and completing tasks in an expected way.
There is a great emphasis on naming feelings in therapy but problems with interoception can mean that feeling things internally like hunger, thirst, pain, emotions etc., can be difficult. Sometimes sensory processing difficulties mean it can be hard for autistic brains to make sense of the signals it is receiving so it can mean that it is difficult to name or understand what sensations you may be feeling, which can make self-regulation difficult.
I have always been described as clumsy, discovering that many autistic people can struggle with sensing the space around them (proprioception, a group of senses that relay information about the position and movement of our body, both with the body itself and in relation to everything around us) helped me understand things like why I sometimes walk on my ‘tippy-toes’, it helps me feel the ground and get a sense of the space around me.
Proprioception can be set too high or too low, for example, hunger may arrive to the brain as a signal, the brain knows there is a signal but does not know what to do so it puts the body on alert and triggers the flight or fight system. This means that a lot of things feel like anxiety i.e., hungry-anxious, excited-anxious, so autistic people can live with a high level of anxiety all the time. This is another example of why it may be hard for an autistic person to label emotions or feelings.
Parasympathetic nervous system
The fight or flight system is controlled by the vagus nerve, it is a fundamental part of your parasympathetic nervous system, this system is responsible for returning the body to a normal state as you calm down and move away from a "fight or flight" response. As mentioned above, autistic people can operate in this heightened response most of the time so therapies best suited for autistic people should operate from the bottom up in a trauma-informed way. Working from the top town, i.e., cognitive when autistic people move from fight or flight to freeze (zone out) can add to the overwhelm.
Once a person is regulated, feels safe, and the overwhelm is reduced there may be an opportunity to move towards cognitive processes, but as mentioned, functioning and capacity are generally not concrete for autistic people, and it can mean it needs to be an intuitive way of working based on where the client is at in any given moment.
How can you help?
reduce sensory input such as noise or smells
use visual prompts if required
be explicit, straightforward, and clear
advanced warnings of cancellations/changes
understanding the autistic persons need to cancel/leave early
reduce the pressure to talk/make eye contact/make physical contact
time to think/process
recognise that autistic communication may include alternative means of communication such as AAC (augmentative and alternative communication) devices
I cannot emphasise enough the importance of autistic/lived experience in training or learning about autism/autistic people. Language and research are ever-changing, and at times, it can be difficult to keep up.
Written and published for the National Counselling Society https://nationalcounsellingsociety.org/blog/posts/working-with-autistic-people-in-therapy