By Margaret Totten
There are a lot of opinions out there about autism. What it is, what it means, how an autistic person behaves or is seen by the world. Many of these opinions and ideas are formed through the media portrayal of autistic people or a generalised idea of what people ‘think’ autism is.
But the medias portrayal of autism is generally very narrow and one dimensional. They, in most instances portray autistic people as socially awkward individuals, who don’t/can’t speak. They are always portrayed as maths or science geniuses, and they have trouble communicating with anyone. That is the version we usually see. That is the single lens picture we paint of those with autism. Very few people take the time to fully understand or seek out information on what autism actually is. What autistic spectrum disorder means? Rather than the generalised view we have of a one size fits all idea of a person with autism, we must recognise that like everyone else, there are usually not, two people with ASD who are exactly the same.
Take my fifteen-year-old son. He was diagnosed aged six with Asperger’s, part of the spectrum usually set apart by language skills at an early age, which he had in abundance. He was talking well before his first birthday and has not stopped since. He is atrociously bad at maths but phenomenally good at English and history. He is chatty and can talk for hours on ancient Norse myths, ancient Greece and whatever YouTube or game he has decided is his thing for the day. He is as far from OCD as possible and his teenager’s bedroom rather than being insanely organised looks like every other teenage boy’s room in the land. He is also dyslexic yet reads books in abundance. He reads three books at a time and jumps back and forth between them and never seems to finish a single task through to completion in any type of linear order. He is as far removed from the media portrayal of what ‘Autism is’ than you can get. He can on occasion be socially awkward (but show me a teenager who isn’t!) but he also has loads of friends, some who, like him are on the spectrum and many who are not. The one thing they all have in common is they are all completely different from each other and from anyone else.
People think autism and automatically go to the stereotypical ideas without realising that what autism is at its core, it is very simply a different way or accessing, storing, recording, or acting on information. That’s all it is. So how do we find ourselves in 2021 with statistics like only 20% of people with autism are currently in full time paid employment. Or that more that 70% of kids with autism will not enter or finish higher or further education? A lot of it goes into the stigma surrounding autism, the lack of understanding and education around neurodiversity and other hidden disabilities. There is as I mentioned a generalised idea of what it is and an even more generalised idea of how we can ‘help’. This lack of education and awareness of what ASD is and a several lack asking for input from neuro diverse individuals into how we solve the challenges it can present creates a divide that can seem impossible to overcome.
When I was asked to write a blog by our marketing department for World Autism Awareness Week, this really brought this home. Because I am not Autistic, I am not on the spectrum and I have no idea what it is like to be neuro diverse in a neuro typical world.
Yes, I am an ally, I am the mother of a child with ASD, and I believe fully in supporting education and driving forward substantial change to break down the barriers for those who are neurodiverse. But how can I, as someone who is neuro typical talk about the challenges people with hidden disabilities have? The answer is I can’t and that is where the problems lie. The media portrayals on people with ASD are written by those who are neuro typical. The solutions we are creating for people with hidden disabilities are generally created by those without those very disabilities. When we first started trying to build ADI (Akari Diversity and Inclusion bot) we had very firm ideas about what we thought it should do. But we now find ourselves, eight months down the line constantly changing, improving, and tweaking it. We originally thought the idea of asking questions and pulling back answers sounded perfect, until someone with dyslexia explained that our wall of text answers was hard to read for someone with dyslexia. Basic mistakes like this are made because we design things with our own world experiences at the forefront.
That is where we need to change things. We need to have open conversations with people with hidden and situational disabilities and find out what they need. Not just assume what we ‘think’ they need. Inclusion policies must be consulted on and if possible written by the very people they are there to represent. The solutions we build must be deigned, created, and tested by the people who need them. We need to start including people with ASD at the design stage and not presenting them with the policies and solutions we have created. In short, we need to stop talking and start listening. We need to start listening to the feedback from people who face challenges and roadblocks every day and to understand that their world view might not be what we think it is. Only then can we truly start to break down those barriers and start really affecting true change.