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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

Featured image: http://www.pixabay.com

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A beautiful lie

You told me to be patient and kind
Don’t lose hope. Don’t give up. 
You see the world can be unkind
But you tell me it’s a beautiful life
It’s a beautiful lie

 

Inspired by Harry Pane’s Beautiful Life

My mind speaks…

The lyrics speak of a dream
The pictures speak of a love
A mind that speaks I miss you

“Never Come Back Again” by Austin Plaine

I wanna see the world, I wanna sail the ocean
I wanna know what it feels like to never come back again

Manly Scenic Walkway, NSW 2010

I wanna feel the waves, crushin’ down on heartache

Port Stephens, NSW 2014

I wanna find the key to the sky and never come back again

Kamay Botany Bay National Park, NSW 2014

I wanna wake my soul, climb the highest mountain

Blue Mountains, NSW 2016

I wanna write my name in the clouds and never come back again

Sydney, NSW 2010

I wanna find my love, lose myself in passion
I wanna love her in my heart and never come back again

Sydney, NSW 2013

I wanna see the end, of a world that’s rounded
I wanna know what it feels like to never come back again

Newcastle, NSW 2010

I wanna ease my mind, of all the doubt that haunts it
I wanna run out in the light and never come back again

Melbourne, VIC 2011

I wanna see those stars, shinin’ down from heaven

Melbourne, VIC 2011

I wanna know what it feels like to never come back again

Break a leg and take a pee

Break a leg

I know I am autistic when I want to wish someone good luck in their performance, so I wrote “Break a leg” but then I deleted it and wrote “All the best” instead because I’m afraid that person will take me literally, and the reason I’m afraid that person will take me literally is because when I say those words, I have the literal image of a person who broke his leg 😖, which would make it a really, really awful thing for me to say!😂

http://s.quickmeme.com/img/e3/e3c69a0be7442ad3803f1d13a61e1e2a8d5fc8bf7fce6c70262b28f31a9252af.jpg

Red Light 🚦 Green Light🚦

I remembered an incident that happened when I was in kindergarten school, about 5 or 6 years old. We were playing a game of “Red Light, Green Light” and I remembered being told to stop moving when the caller said “Red Light” and turned around. If we were caught moving, we were out. “Red Light!” Everyone stopped moving. I stopped moving. The problem was I needed to go to the bathroom urgently. Why was this a problem? Well, I wasn’t supposed to move, remember? I didn’t know what to do and nobody had instructed us what to do in such a situation, all I knew was I can’t move when “Red Light” was called. You can guess what happened in the end. I wet myself.😂

https://mediumlarge.wordpress.com/2011/03/07/excerpts-from-i-could-pee-on-this-and-other-poems-by-cats/

To Jeanne

This post is dedicated to Jeanne from Borderline Crossing who tagged me in a quote challenge with the theme, “laughter is the best medicine”. 

As I searched the website for quotes on laughter, I saw a quote from Ralph Waldo Emerson, “Earth laughs in flowers”. This is taken from one of his poems called “Hamatreya”. 

Hamatreya by Ralph Waldo Emerson

Bulkeley, Hunt, Willard, Hosmer, Meriam, Flint,
Possessed the land which rendered to their toil
Hay, corn, roots, hemp, flax, apples, wool, and wood.
Each of these landlords walked amidst his farm,
Saying, “’Tis mine, my children’s and my name’s.
How sweet the west wind sounds in my own trees!
How graceful climb those shadows on my hill!
I fancy these pure waters and the flags
Know me, as does my dog: we sympathize;
And, I affirm, my actions smack of the soil.”
Where are these men? Asleep beneath their grounds:
And strangers, fond as they, their furrows plough.
Earth laughs in flowers, to see her boastful boys
Earth-proud, proud of the earth which is not theirs;
Who steer the plough, but cannot steer their feet
Clear of the grave.
They added ridge to valley, brook to pond,
And sighed for all that bounded their domain;
“This suits me for a pasture; that’s my park;
We must have clay, lime, gravel, granite-ledge,
And misty lowland, where to go for peat.
The land is well,—lies fairly to the south.
’Tis good, when you have crossed the sea and back,
To find the sitfast acres where you left them.”
Ah! the hot owner sees not Death, who adds
Him to his land, a lump of mould the more.
Hear what the Earth say:—
                EARTH-SONG
          “Mine and yours;
          Mine, not yours.
          Earth endures;
          Stars abide—
          Shine down in the old sea;
          Old are the shores;
          But where are old men?
          I who have seen much,
          Such have I never seen.
          “The lawyer’s deed
          Ran sure,
          In tail,
          To them and to their heirs
          Who shall succeed,
          Without fail,
          Forevermore.
          “Here is the land,
          Shaggy with wood,
          With its old valley,
          Mound and flood.
          But the heritors?—
          Fled like the flood’s foam.
          The lawyer and the laws,
          And the kingdom,
          Clean swept herefrom.
          “They called me theirs,
          Who so controlled me;
          Yet every one
          Wished to stay, and is gone,
          How am I theirs,
          If they cannot hold me,
          But I hold them?”
When I heard the Earth-song
I was no longer brave;
My avarice cooled
Like lust in the chill of the grave.

大肚能容,容天下難容之事; 開口常笑,笑天下可笑之人

A big belly to contain and embrace even the toughest of situations;
Keep smiling and laugh at the most ludicrous of them all. (Buddhist saying)

Laughing Buddha

May your heart bloom with love ❤ (Watch on YouTube for the lyrics)