“I don’t know what to do.”
That was the first thing that came to mind when my son was diagnosed with autism two years ago.
His diagnosis didn’t come as a surprise, instead, every moment I had been impatient with him replayed in front of me and I felt guilty and ashamed.
Despite working with people with autism in the past, and constantly learning about neurodiversity I felt embarrassingly unprepared to help him.
So I did what I imagine any parent would do, I researched and learned how to be a better dad.
I trawled through article after article about the clinical definition of Autism Spectrum Disorder (ASD), got recommended an amazing book called The Curious Incident of the Dog in the Night-Time, and read about the unethical practices of Applied Behavior Analysis.
Autism isn’t what you think it is
“It’s a spectrum– we’re all a little autistic,” many people who don’t have autism say.
And it is, but we aren’t.
Autism is absolutely a spectrum, but it isn’t what you think it is.
It isn’t what I thought it was.
Because despite calling it a spectrum, we often talk and think about it as if it was a scale.
As if one can be a little, medium, or a lot autistic.
In reality, autism isn’t a single condition, it’s a collection of related neurological differences that affects how we see the world and interact with people. It’s often characterised by struggling to understand emotions in others and oneself, by difficulties in social interaction and communication, as well as self-stimulating behaviour (stimming).
Being autistic makes idioms such as “it’s raining cats and dogs” hard to understand.
Its figurative meaning “it’s raining a lot” is lost to a literal interpretation of the phrase.
In reality, because of the interconnected complexity of autism, if you’ve met one person with autism, you’ve only met that person with autism.
Estimates for the number of people who are on the autistic spectrum vary from study to study and most research is exclusively on children.
But given that autistic children become autistic adults and that the results from the adult-studies that do exist suggest that the prevalence of ASD is the same for adults (PDF), then the estimates are transferable.
About 1 in 160 people worldwide have autism.
At 47 million people, that’s more than the entire population of Spain.
It’s also worth remembering that girls and women are often undiagnosed because most of the research is based on boys and men, and ignores social conditioning.
Some well-controlled studies in Sweden have actually reported substantially higher results and the diagnostic criteria are changing as we learn more.
Take action
By designing with people on the autistic spectrum, we build mindful digital services and products from the start. Ones that will never subject people to too much sensory information, and instead allows them to personalise those services to meet their needs.
- Don’t use bright contrasting colours, instead, use simple colours.
- Don’t use figures of speech and idioms, instead, write in the clearest form your language supports (for example, plain English and Simplified Chinese).
- Don’t create a wall of text, instead break up content in headings, simple sentences, and lists.
- Don’t make buttons vague and unpredictable (for example, Click here), instead, make buttons descriptive (for example, Attach files).
- Don’t build complex and cluttered layouts, instead, build simple and consistent layouts.
- Don’t put content in audio or video only, instead, provide captions and transcripts for video content.
Autism is a complex collection of neurological differences, and adults with ASD are often unrecognised and socially disadvantaged because of it.
And it isn’t just autism itself that is complicated, its surrounding environment is as well.
There’s a lot of organisations such as Autism Speaks and the Judge Rotenberg Center who claim to advocate for autistic people but in reality subject them and their families to unethical practices and so-called treatments which are thinly veiled abuse.
Meanwhile, the misinformed anti-vaccination movement denies over two decades of extensive research and studies proving, time after time, that there’s no link between autism and vaccinations.
The fact is that vaccines save lives; they don’t cause autism.
As for my son, well, I’ve now met another person with autism, and I will continue to ask how I can best help him.
To start with, I can stop using idioms, confusing him with the idea that the precipitation contains felines and canines, and instead simply say, “it’s raining a lot.”
Every other Tuesday morning Carlos Eriksson writes Inclusive by Design, where he gathers a decade of knowledge and experience packed into a 5-minute piece of thoughtful and actionable advice on accessible and inclusive practices.