Every now and then I use this colourful, fun-filled website we made to talk about something serious and it often relates in some way to autism. Autism is a big part of our family. It colours everything we do. Autism is threaded through our lives and, speaking personally, I wouldn’t have it any other way. My son is autistic.
For anyone wondering about how we deal with the specifics of ‘person-first’ or ‘identity-first’ language here, we don’t. He’s autistic and he’s a person with autism. One day he’ll be old enough to decide for himself which he prefers and we’ll respect his decision. For now, that’s not important because it’s not important to him and he’s always the driving force of our decision-making.
But how we talk about autism is important and it’s that I want to address. Because I don’t think we’ve got it right yet.
I’m proud to have an autistic son. I’m proud that he does his best to face the challenges that autism presents for him. As his neurotypical, non-autistic dad I can never fully understand what that means for him. I can advocate on his behalf. I can do my best to protect him and help him understand the world as I do for his brother and sister. But I can never fully understand, so I am also always listening to those that DO understand. Autistic people.
Autistic people aren’t all vocal but many are outspoken. Instinctively, I think that voice is the one that should guide our understanding, shape our policies and change our society to be inclusive of difference. It made me think more about what those differences are and consider why we’ve been so quick to label those things that make autistic people unique as wholly negative. That has always struck me as… off.
Autism is known clinically as ‘Autism Spectrum Disorder’. It is a set of behaviours and neurological anomalies that, due to it’s variety in presentation, is broadly considered to be represented within a spectrum. I have no issue with the spectrum, but I have never sat comfortably with ‘disorder’.
Now I’m not saying that autism doesn’t put many of those on the spectrum at a disadvantage. It absolutely does. But then look at why and how. Our civilisation is mostly set up to benefit the broad requirement of our people. That’s why it can be bright or loud or stinky or unpredictable because those are all within reasonable tolerances for most of the people putting up with it. Unfortunately, autistic people’s tolerances can be wildly different. So much of autism as a disability is directly related to their incompatibility with their environment. But surely that’s as much an issue of the environment as it is the person? If we put a PS4 disc in an Xbox One and it won’t work, does it mean that the disc is broken? No, we’ve just placed it within an environment it is incompatible with and it’s unreasonable to expect it to function as well as it perhaps could.
There are parts of autism that are medical. There are common co-diagnoses such as epilepsy, sleep disorders, gastric disorders, etc. But those core things I mentioned aren’t disorders. They are merely differences. This is why I would like to see a change. I would like to see the ‘D’ in ASD stand for ‘Difference’. Autistic Spectrum DIFFERENCE. SPD? Sensory Processing DIFFERENCE.
There was once a school of thought that wanted to remove ‘disorder’ and replace it with ‘condition’. Autism is no more a condition than it is a disorder. If something is fundamental to your identity then it is not a condition. Homosexuality is not a ‘condition’. Race is not a ‘condition’. So autism is not a condition. It is a difference.
I think it would begin to fundamentally change the way that society at large perceives autism and perhaps other ‘disorders’ too. Not just those of us who are involved in some way, either as people with autism, parents of autistic children or other advocates and professionals. Not just people who are some way invested, but people at large. People who just hear about autism in the news or on tv. People who’s only contact with autistic representation might be watching The Good Doctor or Atypical.
We need to begin to teach the idea that there’s nothing wrong with being autistic. That ‘autistic’ does not mean ‘broken’, just different. Not a puzzle to be solved. Not missing some essential piece. Just a different way of perceiving and engaging with the world that might require the world to change just a little bit to provide the things they need, just as it has adapted to everyone else.
Despite the issues that we face as a family with a child on the autistic spectrum I’ve never seen Morgan’s autism as a disorder. He’s just broadly different and often requires us to change gear a little when trying to do our best for him in tandem with his brother and sister. There’s no part of that that strikes me as a ‘disorder’.
But I’d like to know what you think. My perspective is only one story. Let me know in the comments or on social media if you think this would be a positive change. Maybe we need to do something more? I’d love for you to let me know.