By Rachael Thompson
Disclaimer:
The material in this blog is not to be used by any commercial or personal entity without expressed written consent of the blog author. The statements in this blog are not intended to provide individual strategies or interventions. The author does not in any way guarantee or warrant the accuracy, completeness, or usefulness of any message and will not be held responsible for the content of any message. Always consult your personal Occupational Therapist for specific sensory processing advice.
The oxford dictionary defines identity as:
“the way somebody considers their characteristics as a particular individual, especially in relation to the social environment they live or work in”
As an autistic individual I have experienced both opportunities and challenges in understanding, defining and having confidence in my own unique identity, these are explored below.
Proprioception and having an autonomous body
Recognising that we have a body which is subject to our autonomous control I would suggest is our very first stage in the development of our own unique identities.
Many autistic individuals have challenges with proprioception. Proprioception is the ability to perceive and process the sensory information from the joints and muscles that gives us a sense of where our body is in space.
If an individual has challenges with proprioception it can mean that they have difficulties with perceiving the boundaries of their own bodies, difficulties grading force to perform tasks and subsequent challenges with motor skills.
Many autistic individuals with proprioceptive challenges can struggle to produce actions that meet our desired outcomes. Therefore, developing the sense of having a body that we can control autonomously which is distinct from other bodies can be a challenge for some autistic individuals.
I remember in childhood a concept of myself being distinct from others was a particularly difficult concept for me and I would often spend hours looking at my reflection. My reflection gave me the sense of who I was, and I was reliant on my visual system for this as I was not getting enough signals from my body to provide me with this information.
Sensory Processing Differences that are not validated by others
A core concept of self is how we uniquely experience the world around us. When this is validated by others who share similar experiences it strengthens and reinforces our understanding of how we experience the world and how we therefore interact with it. So at the same time a consistent sense of self-identity as well as collective or social identity is formed as our experiences are validated and also consistent with the experiences of others.
If our experience the world around us is significantly different to the majority of other people we may not get the validation that we require to develop a stable sense of self or we may internalise that our experience is ‘wrong’ as this is the message that we are getting reflected by other people’s responses.
When our experience is not validated by other people we can begin to doubt our reality. The implications of this for therefore forming a solid sense of self-identity is apparent and the questions of ‘who am I?’ ‘Why am I so different?’ ‘Why am I not like other people?’ may reverberate in our minds for many years until we are able to access the information, support and guidance that validates our experience of the world and offers an explanation.
For example, I have differences in tactile perception which mean that small superficial injuries to the surface level of my skin give me intense sensory feedback whereas I have broken bones before and continued with my daily activities as normal (including fracturing my arm after falling off my bike on the way to work and getting back on my bike on realising it my arm was broken when I couldn’t apply the brake) as I get far less sensory feedback from internal sensory receptors. Growing up I would often be told to stop ‘over-reacting’ or ‘being dramatic’ when I got a small cut or graze on my skin. Or to stop being ‘silly’ when I refused to have a kiss from my relative that had a whiskery chin.
Invalidation of my sensory experiences not only made me think I was ‘invalid’ as a person but it also reinforced maladaptive masking, internalisation and suppression of expressing my sensory differences and meeting my own needs for various sensory inputs. This led to living the majority of my childhood with a very dysregulated nervous system that was masked by compliance and superficial sociality.
This response and unintentional invalidation of sensory experiences is consistent with many other sensory processing differences that many autistic people experience. This is because they are significantly different to the majority of other peoples sensory perceptions which typically fall in a much narrow range. Until recently there was very little awareness of this so it was difficult for others to understand that it is possible to experience our sensory worlds very differently.
Differences with sensory processing also can lead to differences in gender identity. Which I explore in more depth in my blog: Sensory Processing Differences and Gender Identity
Interoception and thinking rather than feeling
In my blog about interoception, self-awareness and empathy I explore what it is like to find it difficult to perceive the internal sensations that enable people to identity and label emotions. I do not readily sense for example the sense of ‘butterflies in my stomach’ to alert me to the fact that I am anxious.
Over the years this has meant that I have come to identity that my thinking is far more reliable than my feeling. As such my beliefs and values and to a large extent my identity is based on complex analysis of my experiences, values and beliefs that have led me to a conclusion about what I believe to be true. This is a cognitive process based on thoughts rather than feelings about an experience, situation or context. I have strong sense of what is right and wrong, ethics, morals, beliefs and values which form the basis of many aspects of my identity.
Because my identity was formed by what I thought rather than what I felt it was very fluid, my identity was adaptive and enabled me to superficially ‘fit in’ to peer groups, however because my identity lacked the foundation and reinforcement of feelings about experiences it was also very vulnerable.
At times when there was a significant shift in social expectations and demands (i.e. age 5-6, 11-13, 15-18) I almost lost all sense of identity as my carefully constructed social identities no longer enabled me to ‘fit in’ and I had to do a lot of learning very quickly to ‘fit in’ to the new social dynamic of my peer group as this development was not intuitive. This was incredibly tiering and anxiety provoking as for a period of time I became isolated and bullied until I had caught back up. This I believe was one of the main contributing factors to the challenges with my mental health that I experienced at these ages including OCD and Eating Disorders.
A side note on constructed identity and ‘rigid thinking’
My thoughts are binary in that something is right or wrong, it is left or right, yes or no, black or white. I strongly dislike uncertainty and will explore and analyse a topic until I come to a conclusion. The period before a conclusion is reached is extremely anxiety provoking and I will dedicate all my energy to arriving at a conclusion or decision.
My thoughts, decisions and conclusions come from detailed analysis of all that I have experienced to be true. They are carefully constructed from multiple variables and beliefs from the very core of what I also believe to be true about myself.
To challenge a singular one of my thoughts is therefore to challenge all those variables and beliefs. This can feel overwhelming and the experience of this is that you are challenging the essence of who I am.
Like many autistics my own experiences received little validation which led to the belief that if you challenge who I am it is because my whole person and brain is wrong. The subsequent response to someone challenging my thoughts when I was younger was therefore very defensive. People could perceive my defensiveness as well as my preference for binary thinking as ‘rigid thinking’.
I would challenge this as under my own volition I have a very flexible and creative mind. I thrive off being given a problem to solve or a question to answer and often take a very creative and thorough approach to this no matter what the problem or question.
Social Identity.
Despite a desire to not stand out and exploring the collective identities of many different peer groups and putting incredible efforts into creating a superficial identity (masking) to ‘fit in’, I knew I didn’t and none of the identities I formed really fitted me.
Ultimately through necessity I had to form a unique self-identity of my own based on a depth of understanding of my own unique experience that perhaps is not of such necessity for individuals who’s sense of identity is affirmed collectively and socially by those around them. I understood from my experiences that I could not define my identity by its relationship or commonalities with social identities.
The positive of this is that at the other side of this exploration and the challenges that I have worked through I now have what I believe to be a strong sense of my own identity which is not vulnerable to the influence of others, and I benefit from the confidence and resilience that comes with this.
Formal identification (otherwise referred to as diagnosis) and Collective Identity
I was formally identified as being autistic as an adult. To explain how this changed my identity I will use an analogy of building identity as being like putting together the pieces of a jig-saw.
Growing up and developing my identity was like trying to put together the pieces of the puzzle, but the pieces did not really fit together very well. The result being that once assembled the picture was distorted and didn’t make much sense. It was also vulnerable to breaking and had to be re-constructed a number of times throughout my childhood and adolescence.
Receiving formal identification was like turning one of the pieces over and seeing there was a different picture on the other side. I had to deconstruct and reconstruct all of my experiences, beliefs and values about my identity through the understanding that I am autistic and have sensory processing differences. When I did this the pieces fitted together much better and at the end I got a much clearer and more coherent picture of my identity. On this side of the puzzle, I also found the words resilience, confidence and belonging.
This process was ultimately very beneficial however that isn’t to say that there were not challenges. The deficits-based model of formal identification and the predominant deficits-based terminology used in research (up until recently) meant there were times in this process that I overly identified with challenges that were highlighted in my formal identification report and I became very unsure of myself and my competence as a human being.
Reading the narratives of other autistic individuals was incredibly supportive and powerfully therapeutic in this process and I am thankful for all autistic authors that are brave enough to write about not only their vulnerability but also their incredible strength. I now fully embrace and benefit from the collective identity of being autistic and the collective identity of belonging to a neuro-diverse species.
References
Allen, M., Tsakiris, M. (2018) The body as first prior: Interoceptive predictive processing and the primacy of self-models. in Tsakiris, M. and Helena De Preester (eds). The interoceptive mind : from homeostasis to awareness. Oxford, United Kingdom: Oxford University Press pp27-45.
Anderson-Chavarria, M. (2021). The autism predicament: models of autism and their impact on autistic identity. Disability & Society, pp.1–21.
Brewer, R., Cook, R., Bird, G. (2016). Alexithymia: a general deficit of interoception. R. Soc. Open sci, 3: 150664. http//dx.doi.org/10.1098/rsos.150664.
Cooper, K., Smith, L.G.E. and Russell, A. (2017). Social identity, self-esteem, and mental health in autism. European Journal of Social Psychology, 47(7), pp.844–854.
Craig, A.D. (2003). Interoception: the sense of the physiological condition of the body. Current Opinion in Neurobiology, 13, 500-505.
Elwin, M., Ek, L., Schröder, A. and Kjellin, L. (2012). Autobiographical Accounts of Sensing in Asperger Syndrome and High-Functioning Autism. Archives of Psychiatric Nursing, 26(5), pp.420–429
Fiene, L., Ireland, M. J., & Brownlow, C. (2018). The Interoception Sensory Questionnaire (ISQ):a scale to measure interoceptive challenges in adults. Journal of autism and developmental disorders, 1-13.
Hatfield, T.R., Brown, R.F., Giummarra, M.J., Lenggenhager, B. (2019). Autism spectrum disorder and interoception: Abnormalities in global integration? Autism, 23(1), 212-222.
Riccio, A., Kapp, S.K., Jordan, A., Dorelien, A.M. and Gillespie-Lynch, K. (2020). How is autistic identity in adolescence influenced by parental disclosure decisions and perceptions of autism? Autism, p.136236132095821.
Rivet, T.T. and Matson, J.L. (2011). Review of gender differences in core symptomatology in autism spectrum disorders. Research in Autism Spectrum Disorders, 5(3), pp.957–976.
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