United colours of autism

Dialogues in Autism Spectrum Diversity:

United colours of autism

This or that?

‘Autistic’ or ‘Person with autism’

‘Disability’ or ‘Not a disability’

‘Autism Spectrum Disorder’ or ‘Autism Spectrum Condition’

‘Disorder’ or ‘Difference’

‘Cure’ or ‘No cure’

‘Asperger’ or ‘Autism’

‘High functioning’ or ‘Low functioning’

‘Gift’ or ‘Curse’

Issues like these are hotly contested in the autism community, and the list goes on. The intensity to which some of these opinions are held makes me wonder if there is a straightforward answer. Is it that black and white? Or does it have to do with the black and white thinking autistics are purportedly renowned for? Is there an absolute right or wrong? Or is it a case of Yanny or Laurel? What is truth? Is it ok or will I be chastised for sitting on the fence?

There are some who strongly disagreed that autism is a disability or disorder. Some researchers such as Baron-Cohen (2002) and Cassidy et al (2014) have substituted the word ‘disorder’ with ‘condition’ to avoid the negative overtones of the disorder label, while recognising autism as a medical diagnosis for which individuals need support. However, there are still others who think that even the use of ‘condition’ is problematic. Proponents of the identity first language (autistic) believe that it is impossible and damaging to separate a person from their autism. Describing oneself as autistic is an act of positive assertion of one’s identity and the celebration of autistic pride. On the other hand, there are others on the spectrum who prefer to use ‘with autism’ or ‘has autism’ because autism is but only one aspect of their identity. I have inevitably simplified both sides of the argument as I’m not here to discuss the pros and cons of each and I have no desire to engage in a heated and emotionally-charged debate that only has a win-lose or lose-lose outcome. I don’t think issues like these are contentious purely because of the black and white thinking commonly associated with autistic individuals. In this respect, the social media is hardly the best place for constructive dialogues. We have heard the arguments from both sides but if we listen more intently, we might also hear what is left unsaid – grievances and misgivings, remnants from the past, perhaps of an unfulfilled childhood or lost opportunities, the past that shape the present, the misdiagnosis and distrust of professionals, and the stories of those who grew up in high conflict families and want to put a stop to the constant bickering of which they are tired of. The stories crying to be heard but were left unsaid and remain unheard. Not only is each autistic individual different, so is their experience. Some aspects will strike a stronger chord with me, some aspects less. When you listen to the stories of a 100 people, you get a 100 stories. This brings me to my next question. What does diversity mean? Is there such a thing as a united autism community? Which term should you use, say for example, when you are addressing an audience that consist of diverse individuals, with or without autism? When there are two or more divergent views, is it a case of the majority prevails?

In a study on the experiences of autism acceptance, Cage, Monaco and Newell (2018), used both identity-first language and “person on the autism spectrum” to fit with the language preferences of the autism community in the UK and the participants in their study. In Australia, autism community group, Yellow Ladybugs used person-first language (girls with autism) and identity-first language (autistic girls) interchangeably to respect the various views in the community. There was a study (Kenny et al. 2016) that looked into this specific issue and published a paper titled “Which terms should be used to describe autism?” Personally, I wish this issue didn’t come up as a research priority but it does demonstrate that “there is no single way of describing autism that is universally accepted and preferred by the UK’s autism community.”

Diversity doesn’t necessarily mean the majority prevails. It means individual preferences and mutual respect prevail. I see the autism community as composing of diverse individuals with diverse views. Similarly, I see the essence of diversity as embodying and being open-minded to diverse and divergent opinions, in which case, it is less a question of the right or wrong terminology, but the right attitude. “Is it rude to call a black person, black?” I asked a friend this question when I was 16 and studying in the UK. I didn’t know if it was rude to describe a person by their colour and my fear of offending people has led me to avoid asking questions. However, by fearing to speak or ask, this also stifles diversity and understanding. Autism advocacy is hard work and the path to activism is not easy, you have to stand up for what you fight for and stand firm for what you believe in. But I believe this can still be achieved with mutual respect. I get anxious about writing topics like this for fear of inviting backlash or getting comments that disagree or disapprove with what I espouse. I get defensive easily, not in a malicious way but in an anxiety-induced way, it is not necessarily the best coping strategy, but this is my self-protective mechanism. However, if I believe in diversity like I said I do, then I have to accept differences in opinion. Ideally, the choice of terminology doesn’t have to be accompanied with trigger warning labels that seem to close off dialogues when differences are expected. Diversity should trigger and invite discussion. To adapt a quote from a local Cantonese drama, “Diversity is not a hundred people saying the same thing. Diversity is a hundred people saying a hundred different things, but who nonetheless remains respectful of one another.”

Where do I stand? I use “autistic”, “persons with autism”, “persons on the spectrum” etc. interchangeably. Use whatever the person you’re talking to is comfortable with or prefer. Afterall, isn’t diversity about making individualised accommodation, where possible? If this is not possible, for example, where you are addressing a large diverse audience, I would use it interchangeably. In writing, I use autistic quite often simply as a matter of practical convenience (why use 3 or more words when you can use 1)? I’m sitting on the fence, not in the sense of being undecided, but seeing that as a choice in itself.

Photo by Ravi Kant from Pexels

This or that… or none?

I will end this post with a piece I wrote few months earlier.

Thank you for reading ❤

 

 

If you’ve met one person with autism, you’ve met one person with autism
Remember this because this is about my autism
You don’t have to be sorry, you don’t have to congratulate
My autism is neither a curse nor a gift
It is simply a human condition that needs no cure nor blessing
I am not a neurotypical nor atypical autistic
I have no superhuman abilities nor gifted skills, I am neither low nor high
Just a hard functioning autistic with hypersensitivity to sounds and crowds,
trapped in a concrete jungle of noise and people and the endless pursuit of materialistic goals
My autism needs no cure, it needs vast open space to breathe and abundant solitude to heal
I’m not proud of being autistic. I’m proud to let my weirdness shine.
A half full glass is a half empty glass. My autism is both a disability and ability.
Autism is not a difference, it is another way, it is an alternative
It is a part of human condition, it is a part of human diversity
I don’t grieve nor celebrate my autism, I celebrate diversity
Diversity needs no cure, it needs kindness, support, respect and understanding
Remember that if you’ve met one person with autism, you’ve met one person with autism
If you’ve met one person, you’ve met one person. Let each person tell their own story.

*This represents my own view and do not represent the entire autism community.

References

Baron-Cohen (2002) Is Asperger Syndrome necessarily viewed as a disability? Focus on Autism and Other Developmental Disabilities. 17(3):186.

Cage, Monaco and Newell (2018) Experiences of Autism Acceptance and Mental Health in Autistic Adults. Journal of Autism and Developmental Disorders. 48(2):473.

Cassidy et al. (2014) Suicidal ideation and suicide plans or attempts in adults with Asperger’s syndrome attending a specialist diagnostic clinic: a clinical cohort study. The Lancet. 1(2): 142.

Kenny et al. (2016) Which terms should be used to describe autism? Perspectives from the UK autism community. Autism. 20(4):442.

Yellow Ladybugs and The Department of Education and Training Victoria (2018) Spotlight on Girls with Autism.

Related post: Dialogues in Autism Spectrum Diversity

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Dialogues in Autism Spectrum Diversity

If you’ve met one person with autism, you’ve met one person with autism. If you are autistic or follow autism related news, chances are you have heard this many times before. But outside of the autism community, how many people have heard of it? How much does the average person, the person seated next to you, the person you just walked past, the person you just talked to etc. know about autism? How many friends do you have and how many are autistic? The average person is likely to have heard of autism but how many persons with autism have they actually met? I’m pretty sure my colleagues have heard of autism but are they aware that they are sharing the office space with an autistic? I’m not suggesting we should start going around and ask if a person is autistic nor am I suggesting we should be diagnosing people ourselves. I don’t discriminate between autistic and non-autistic friends because autism doesn’t define me, it is only part of my identity. What I would like to alert people’s attention to is not my autism but the condition of diversity. I can’t be certain that everyone I met is neurotypical so to err on the side of caution, I remind myself to be more tolerant. Because of the invisibility of autism, it may be hard for the average person to realize that someone they know is actually autistic and that they are sharing a common space with them. People know autism exists but what they may not realize is how close they are in proximity to one.  As a result, autistics continued to be ignored because their existence are not recognized. As I’ve said, I don’t think we should make it a point to categorize people we know by their neurological condition. It could be misused as a tool to discriminate, which is not my intention. It is easy to forget that underneath all that diagnostic labels, we are all humans and we all share the same earth. Each of us is one unique individual but we too easily forget the very essentials of human condition as we subsume into a socially constructed mould and conform to social pressures. We think and expect everyone to think and behave like us with no room for differences. The autistic presence remains largely unknown to the general population, and so the majority demands the same rigid rules from everyone else to maintain status quo without further reflection of the diversity of the human condition. You don’t need to know I am autistic. I just need people to be aware that people of neuro-diverse conditions exist within the same proximity as them and be considerate of their diverse needs. Alas, too many people live oblivious of our existence and in the ignorance of diversity, not aware that we live with you side by side, flesh and blood. This makes me think that there is therefore a need for autistics to be seen and heard. We need to talk but right now and too often, we are just talking amongst ourselves and are invisible to the population outside the autism community; on the other hand, the autism community is composed of diverse individuals in itself. Disagreements are expected but how can discussion be more constructive? How can the autistic presence be more visible?

Dialogue (US dialog):

“A discussion between two or more people or groups, especially one directed towards exploration of a particular subject or resolution of a problem.” Oxford dictionary

“A serious exchange of opinion, esp. among people or groups that disagree.” Cambridge dictionary

Public dialogue:

“Deliberative (i.e. over time) participatory engagement where the outcomes are used to inform decision-making”. Research Councils UK, Public Dialogue Review

Photo by Antenna on Unsplash

Public awareness demands public dialogue. Society and advocacy groups need to build, exchange and facilitate dialogues between members of the autism community, between the autistics and the persons with autism, between autistics and allistics, between autistics and their caregivers, between the experts who study autism and the experts with personal and lived experience of autism, between autism related service providers and autistics etc., because all too often, the autistic view is not being consulted. Today, I am one person you met with autism and I hope you get to meet more persons with autism. The day we become sufficiently aware and enlightened to the diversity of human condition, the autism identity or label takes on less importance, except for the purpose of informing the kind of support needed. I hope one day, the community and us can engage in meaningful dialogues on Autism Spectrum Disorders Diversity.

https://www.pinterest.com/pin/458170962068263570/

As usual, this represents my own view and not of the entire autism community.

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