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1 The Beginning

Updated: 1 day ago

Thinking about how to write this and how to express myself has been a challenge, bearing in mind that I definitely don't have a way with words, and I am currently trying to understand who I am (given new-found information soon to be 'revealed'). Nevertheless, I am fortunate enough to have both a voice and platform to express myself, so I feel compelled to share my story. I want to create more awareness and be the voice for those who cannot speak up. However, I do recognise that my blog is based on personal experience, hence not everyone will agree. Apologies in advance if anyone is upset by what they read; that’s not the intention. But enough with the rambling here it goes...

Hi, I’m Nidhi, and I am autistic.

For those of you who know me, you may be slightly confused and/or surprised. I am known for being a loudmouth, chatterbox, confident and brutally honest – most of which are true. But behind the smile I also struggle with anxiety, sensory issues and social and communication difficulties.

Autism Spectrum Disorder is so much more than the common stereotypes that you may think of and are presented in the media. I want to raise awareness of this diagnosis, in particular the subtle signs and symptoms, in addition to the daily challenges, so people have a better understanding of the diversity between autistic individuals. Through my blogs, I will touch upon the history of autism, the diagnostic criteria, the variation between the sexes, common traits, association with mental health disorders and more. The hope is that autistic individuals will feel they are not alone, parents will have an insight into their autistic child, friends may understand peculiarities and that I will have an opportunity to scratch the surface of an under-diagnosed condition that makes individuals just that – an individual.

First a few definitions (more information on the ‘read more’ page):

- Neurodiversity is broadly defined as an approach to learning and disability that suggests diverse neurological conditions appear as a result of normal variations in the human genome.

- Neurotypical is the opposite of neurodivergent. Neurotypical means being "neurologically typical" - used to describe a person whose neurological development and state are typical, conforming to what most people would perceive as normal [Disabled World, 2020].

So, what is Autism Spectrum Disorder (ASD)?

Finding an appropriate definition for ASD can be challenging as even within the neurodivergent population, people have different opinions based on their own experiences. The National Autistic Society UK has a definition, which I have broken down into two parts:

  1. Autism is a lifelong developmental disability that affects how people perceive the world and interact with others. Autistic people see, hear and feel the world differently to other people. If you are autistic, you are autistic for life; autism is not an illness or disease and cannot be 'cured'. Often people feel being autistic is a fundamental aspect of their identity.

As stated above, autism is not an illness or a disease. Most autistic people feel that autism is just a part of them, how they learn and process the world. In fact, it is their normality. They know no different. For this reason, it is preferred by most in the autistic community to say, “I am autistic” (identity-first language) as opposed to “I have autism” (person-first language). Just like you ‘are British’, not ‘have British’. (In any case, when interacting with an autistic individual, it is always best to ask them what they prefer.)

2. Autism is a spectrum condition. All autistic people share certain difficulties but being autistic will affect them in different ways. Some autistic people also have learning disabilities, mental health issues or other conditions, meaning people need different levels of support. All people on the autism spectrum learn and develop. With the right sort of support, all can be helped to live a more fulfilling life of their own choosing [National Autistic Society, 2016].

This second part of the explanation is what I would like to explore in more detail. Most people have an image of Autism, but through my encounters of others I feel there is little understanding of the word spectrum within the diagnosis of ASD. By a spectrum, I have realised that the majority tend to think of a continuum (number line) with ‘severely autistic / low functioning’ on one end and ‘mildly autistic / high functioning’ on the other end. However, this is far from what I envisage. To me, the visual representation of spectrum in this context is more like a web (Figure 1).

Figure 1



The simplest visual explanation of my view of a spectrum is to observe a player profile web on FIFA (shown below in Figure 2- yes, I am an Arsenal fan).

Figure 2



If you don’t play FIFA yourself, or have a brother who lives on it ;), this may be a foreign concept. Basically, various player’s skills are positioned on the edge of a circle and the strength of each of these skills is mapped (resulting in a web). With ASD, I picture various traits on the outside. The level of function for each is mapped to form a personalised web resulting in a visual representation of our own challenges but also our own strengths.

I like this representation as it is relatable and helps me visualise the huge diversity within autistic people. It is clear to see that each person’s Autism presents differently and is unique to them. The web allows neurotypical people to view our attributes as too often only our quirks are noticed and focused on. Additionally, the web makes it more obvious that ASD is not ‘low functioning’ vs ‘high functioning’. These terms can be quite upsetting to autistic people. Simply put, they invalidate both the struggles and successes we experience.

Neurotypical individuals should be aware of the language they use when speaking to an autistic person or when discussing ASD. Many people are unaware of the distinction surrounding identity-first and person-first language and the classification of functioning labels, which can be degrading and invalidating. Hopefully, you now have a flavour. No-one expects neurotypicals to understand how neurodivergent people think, as I can’t say that I fully understand others either, but I try. With this first post I hope to raise these terms and concepts into your consciousness in an effort to bridge the gap between us as it is crucial for better communication and inclusion.

Autism Spectrum Disorders is a hugely broad topic so I hope this page will be the start of a learning journey.

For anyone interested, check out the read more and resource pages for some informative links. In addition, if you want to find out more about me have a read of the about me page.

Thanks for reading,

Nidhi :)

 

References


Disabled World, 2020. What Is: Neurodiversity, Neurodivergent, Neurotypical. Available at: https://www.disabled-world.com/disability/awareness/neurodiversity/ [Accessed September 5, 2020].

National Autistic Society, 2016. Autism - what is it? Available at: https://www.autism.org.uk/about/what-is/asd.aspx [Accessed June 18, 2020].


Cover image: Breezy, 2020. Neurodiverse Talent: The Practical Guide to Attracting and Retaining an Untapped Candidate Pool. Available at: https://breezy.hr/blog/practical-ways-to-attract-neurodiverse-talent [Accessed September 15, 2021].

Figure 2

Edwards, H., 2020. FIFA 20 VOLTA: How to get the best out of Arsenal: Advice, tips, guide. Squawka. Available at: https://www.squawka.com/en/fifa-20-arsenal-volta-football-tips-advice-guide/ [Accessed November 5, 2020].

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aditimatta2611
Feb 22, 2022

Since I am from India I am not too familiar with Autism but you explained it so nicely. I would try my best to make people aware about the same. Amazing blog! Much love :)

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