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5 Let’s talk 'emotions'

Over 70% of autistic individuals suffer from mental health problems [MQ, 2018]. That’s 7 in 10 autistic individuals! But why? Why is the prevalence of mental health illnesses significantly higher amongst autistic individuals?

There is no definite one reason, rather a combination of factors, some of which I have mentioned below. It is important to identify these in order to investigate methods of reducing comorbidities within the autistic community, for an increased quality of life.

A lack of diagnosis: Whilst some may say a diagnosis is pointless, given that autism is not a condition in search of a ‘cure’, I believe that a lack of diagnosis plays a significant role in contributing to mental health comorbidities. Before my diagnosis I felt that there was something wrong with me. I would laugh at jokes I didn’t find funny and nod in situations I couldn’t understand. In general, social situations were confusing and simply exhausting. Thinking the problem stemmed from myself and that I was different in a bad way, lead to my wellbeing suffering and taking a spiral downwards. Since my diagnosis, my thoughts and view on life have changed dramatically – for the better. I am an advocate that the right diagnosis can revolutionise an individual and their world.

Misdiagnoses: I feel incredibly lucky to be diagnosed so quickly, however the majority of individuals (girls in particular) endure a long, sometimes painful journey of misdiagnoses. Often autistic individuals are misdiagnosed with depression, anxiety or an eating disorder, where the clinician either prescribes them with medication or therapy sessions. In my case, my initial encounter with a psychologist and psychiatrist left me feeling deflated, isolated and completely misunderstood. Internalising these challenges and facing battles with oneself as well as uninformed parents, friends and clinicians can lead to poor wellbeing, progressively resulting mental health disorders. Personally, when receiving my diagnosis, I was relieved as I no longer felt I had to conform to social pressures; instead, I could just be who I really was.

Labelling: There is also the argument that a label is not always a good thing. It can be a source of bullying by others and turmoil in the individual, leading to them feeling separate from the community, resulting in self-isolation. In addition, most low-support need autistic individuals will relate to feeling too normal to be autistic, but too autistic to be normal. Personally, this is a very real feeling. There is a misconception that neurological conditions, or even mental health disorder present themselves physically and thus society has an idea of what an autistic individual ‘looks like’. Not following this perception means that I am not autistic, or at least not autistic enough (whatever that means).

Furthermore, labelling can lead to false generalisations – such as autism in everyone is the same, so one autistic individual will have the same strengths, weaknesses and needs as another. This is factually incorrect (autism is a spectrum!). The work of Rosenthal and Jacobsen (1968) led to discovery of the Pymalion effect, proving these generalisations in a school setting. Their research proved how the teacher’s expectations of a student influence their performance. Positive expectations influence positive performance, and negative expectations influence negative performance [Duquensne University, 2020]. Therefore, the negative connotations associated with autism could negatively affect the individual. However, to what extent compared to a lack of diagnosis / misdiagnosis is something to consider.

Interoception difficulties (the ability to be aware of our own bodies): This is reported to be reduced in autistic individuals. It may present as a lack of personal hygiene, not needing to brush your teeth. Obviously, this will impact an individual's social acceptability.

Alexithymia (an inability to find words to describe your emotions): Approximately 50% of autistic people have alexithymia [Leonard, J. , 2019]. A subclinical phenomenon involving a lack of emotional awareness or, more specifically, difficulty in identifying and describing feelings and in distinguishing feelings from the bodily sensations of emotional arousal [Nemiah, et al., 1976]. In simple terms, I can identify that I am feeling something, a shift in state, but I can’t always tell you if it is surprise, anxiety, sadness, etc. or just an upset stomach.

Both a lack of interoception and alexithymia leading to a lack of awareness of an individual’s body and emotions, can also result in difficulty when maintaining relationships. This feeling of being alone, misunderstood and lost can lead to social isolation, withdrawal and poor mental well-being. Additionally, for those who continue to attempt to pursue social relationships, this can result in feeling even more out of place, being ostracized.

Having a muted emotional literacy, can lead to a lack of social-emotional development: how individuals are able to understand who they are, what they are feeling and what to expect when interacting with others. It is the development of being able to: form and sustain positive relationships, experience, manage and express emotions and explore and engage with the environment [Help Me Grow].

It is important though, not to assume the above equates to having no introspection (examining one’s own mind and thoughts). I would argue that I have often wondered why I don’t fit in and what was ‘wrong’ with me.

Masking: As mentioned in a previous post, masking is incredibly exhausting. It requires huge effort to fit in within a neurotypical society and camouflage an individual’s true identity. Through pure exhaustion as well as the feeling of having to hide who you really are (potentially resulting in further isolation) can lead to significant consequences and serious mental health illnesses.

Figure 1


[Pebbel Art, 2018]

Burnout: I suspect most autistic individuals internalise challenges as so many do not learn how to express their emotions. Therefore, continuous struggles and internalisation can lead to burnout, the long-term psychological exhaustion of trying to imitate the behaviours of neurotypical people, which can cause depression and other mental issues [Egeskov, C. , 2019].

Like most things with autism, burnout symptoms differ between people however, physical exhaustion is a common symptom. This makes it harder for an individual to manage their emotions, meaning their autistic traits may be more obviously presented (like an increase in repetitive behaviours). Burnouts are particularly common amongst autistic individuals with low support needs, who are in a high sensory stimuli environment or surrounded by a large number of neurotypical individuals; as mentioned before, it can be exhausting to mask [Deweerdt, S. ,2020].

Biological causes: The comorbidity of autism and mental health illnesses may also be due to biological reasons. Studies from Harvard Medicine has led to estimates that ASD (among other neurological disorders) are 60-80% heritable [Dutchen, S.]. If true, this would mean that the majority of ASD cases are due to parental traits, whether influenced by nature alone or nurture as well is yet be determined.

Autism may share similar biological mechanisms to other known mental health conditions, For instance, another study revealed that the gene-expression patterns in the brains of autistic individuals is similar to those with schizophrenia or bipolar disorder. These individuals may also share genetic variants and traits (like language difficulties).

The relationship to autism may be multifaceted, meaning that the connection may be partly genetic. This follows the suggested link between epilepsy and autism (as there is an eightfold risk of autism in individuals with epilepsy). [Furfaro, H. , 2018].

**

Whilst in lockdown, I have had time to reflect on my life pre-diagnosis; I have started to understand myself better: the way I think, my behaviours and quirks, the things that bother me, the way I am wired. For me, a diagnosis has been incredibly useful. It has led to even more acceptance from family and friends, developing effective coping strategies (although this is an ongoing aspect of my life), a proper support system and required services within the school environment. These are all necessary to reduce mental health illnesses within the autistic community.

Seeking a diagnosis can help identify challenges as each individual diagnosed with ASD will have a varying web of traits (refer to my first post). It may sound silly, but you don’t know what you don’t know. My meaning by this is that prior to my diagnosis, I knew I found the sound of family members chewing their food at the dinner table slightly annoying at times, but this turned to completely intolerable during lockdown, when my anxieties were at a peak. I would storm off in the middle of dinner which was totally out of character and I couldn’t explain myself. It was only post diagnosis that the educational psychologist explained how sensory sensitivities are known to be associated with ASD and that these heighten when an individual is stressed. Now, this seems so obvious but in the middle of dinnertime in lockdown none of us in the family could understand the drama! By obtaining explanations for things that seem unexplainable, individuals can seek the support they need. In my example above, I recognised the loud chewing as a sign of me being overloaded and so I asked to be excused rather than creating a scene. My family also understood that there were days when I couldn’t manage the whole mealtime and did not get offended when I left the table.

Having a diagnosis is the key to being self-aware and recognising collateral co-morbidities. At the same time, it is crucial that these individuals have a support network who understand what they may be facing and how to help.

Just reading this blog and becoming more aware is a simple step that will help autistic individuals feel more comfortable and understood. Hopefully, in time, it will also reduce the stigma and discrimination faced, allow them to feel less forced to mask their behaviours and consequently reduce other serious mental health illnesses.

Thanks for reading,

Nidhi :)

 

References

Deweerdt, S., 2020. Autistic burnout, explained. Spectrum News. Available at: https://www.spectrumnews.org/news/autistic-burnout-explained/ [Accessed August 3, 2020].

Duquesne University, 2020. The Pygmalion Effect. Available at: https://www.duq.edu/about/centers-and-institutes/center-for-teaching-excellence/teaching-and-learning-at-duquesne/pygmalion [accessed 11 November 2020]

Egeskov, C. , 2019. The Art of Masking: Women with Autism. Tiimo. Available at: https://www.tiimoapp.com/blog/art-of-masking-women-with-autism/ [Accessed August 7, 2020].

Furfaro, H. , 2018. Conditions that accompany autism, explained Spectrum News Available at: https://www.spectrumnews.org/news/conditions-accompany-autism-explained/ [Accessed November 7, 2020]

Help Me Grow, What is Social and Emotional Development. Available at: https://helpmegrowmn.org/HMG/HelpfulRes/Articles/WhatSocialDev/index.html [Accessed July 22, 2020].

Leonard, J., 2019. Alexithymia: Symptoms, diagnosis, and links with mental health. Medical News Today. Available at: https://www.medicalnewstoday.com/articles/326451 [Accessed August 7, 2020].


MQ, 2018. 5 studies improving mental health in autistic people. Available at: https://www.mqmentalhealth.org/posts/5-studies-mental-health-in-autism [Accessed August 7, 2020].

Nemiah, et al. , 1976. Alexithymia. Alexithymia - an overview | ScienceDirect Topics. Available at: https://www.sciencedirect.com/topics/neuroscience/alexithymia [Accessed August 7, 2020].


Cover image: Minahil Nadeem. Emotional Intelligence -What is it? And how to BUILD it? RangeInn. Available at: https://rangeinn.com/emotional-intelligence-17695/ [Accessed November 7, 2020]


Figure 1

Pebbel Art, 2018. Autistic burnout. Mental Illness by Pebbel Art. Available at: https://pebbelart.wordpress.com/category/autistic-burnout/ [Accessed August 3, 2020].

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