Words don't come easy... Debby Elley examines the need for a more explicit, balanced and environmental approach to talking about autism.
As well as being the co-editor of AuKids magazine, I’m mum to twin autistic boys. One of them, Bobby, is verbal and has just left mainstream school. When Bobby was seven and able to converse a little, it seemed a good idea to talk to him about what autism meant to him.
My head then had to do little somersaults in order to couch all the negative phrases I’d heard into something that sounded slightly more palatable and would be less damaging to my little boy’s self-esteem.
One reason why my co-editor Tori Houghton and I decided to write The Ice Cream Sundae Guide to Autism is because we recognised that parents weren’t being given the necessary tools to do this.
We didn’t particularly feel the need to make an explanation positive; we just wanted to adjust the definitions we’d heard to create a more balanced, neutral picture.
We wanted kids to understand that their autism, just like their personality, was different to everyone else’s
We designed this in the form of an ice cream sundae. The sundae includes all the aspects of autism, including ingredients that grow and shrink according to the environment. Some ingredients are present all the time, others aren’t. Some change over time and with intervention (represented in our sundae as a spoon). This is a full explanation of autism so that children can create the combination of ingredients or the ‘sundae’ that best expresses who they are.
We didn’t want a one size fits all explanation – we wanted kids to understand that their autism, just like their personality, was different to everyone else’s.
Our work on the sundae book is just a drop in the ocean (or a sprinkle on the sundae, if you will). The fact is, we need to make our entire dialogue around autism richer and less simplistic. The people who live and work with autism have a job on their hands to communicate the condition accurately to those who don’t know much about it. And often I’m afraid we’re just far too vague.
So, what’s needed in order to move forward? One way ahead is a focus on explaining each aspect of autism in a more neutral way, expressing clearly both drawbacks and benefits, rather than predisposing people to think in terms of deficits.
For instance, if you’re a rigid thinker, you’re also the sort of person who will tenaciously grapple with a problem until you’ve fixed it. If you don’t like change, it also makes you loyal and reliable. Plus, although you may have to learn social skills, the flipside of this is that your brain can be focused on things (rather than spend a lot of time analysing behaviour) to the point where you become highly knowledgeable in some areas, expert in others.
In this day and age, when social media encourages a rock-pool depth of knowledge that just skims the surface of a subject through headlines, memes and newsflashes, it’s good to know that there are still people out there passionate enough to examine a subject in minute detail.
It’s not autism itself that’s the problem, it’s the environment
And yes, an autistic youngster may struggle to attend to a teacher when they’re rambling on at the front of class. Processing problems paired with auditory difficulties make this hard. But show the same pupil something visual to learn from, such as a YouTube video, and they’ll memorise and recall it easily.
As our youngsters grow, it’s not enough to explain autistic traits – we have to do this in a way that gives them a balanced sense of a brain that works using a different operating system.
I’ve heard people give lip service to the ‘positive’ aspects of autism. They quote ‘good memory, sometimes good at maths, er…erm…’
As my sons grew, I started to realise that they were a lot easier than other children: more self-sufficient, ready to entertain themselves, less attention seeking. If they had a ‘meltdown’ (another often used negative term) it was for a genuine reason, not because they wanted an ice-cream (if you'll pardon the expression). I started to be truly grateful for their inner resourcefulness. But I still don’t see enough written about this for families navigating a diagnosis in the current world.
There’s one other thing that we need in order to move forward and that is the recognition that autism is always visible as an interaction with a person’s environment, rather than an entity on its own. It constantly changes as a result.
There is no aspect of my sons’ behaviours that isn’t a direct result of their environment, including what – and who – is in it.
Take social skills as an example. If you watch the dialogue in Autcraft, the autism friendly server version of Minecraft, you will experience positive, polite and cooperative interaction. The autistic players are focusing on something they love in an environment they feel comfortable in, and all of a sudden, social skills don’t seem to be so ‘impaired’.
So, impairments are only apparent when an environment is not accommodating. When you are experiencing distressed behaviour from an autistic person, you have to ask yourself what – or who – is causing it. It’s not autism itself that’s the problem, it’s the environment.
Autism doesn’t exist in a vacuum and we should stop explaining it as if it does.
We still rely on the Diagnostic and Statistical Manual of Mental Disorders for diagnosis of autism. This may give you an indication as to why messages about autism aren’t balanced from the start. In order to diagnose autism, you have to tick off a list of traits, none of them phrased in particularly neutral terms.
Our awareness now needs to spread beyond that definition, to communicate more clearly about a condition that is so much more than a medical manual can express.