Talking about autism is complicated – World Autism Awareness Week

Talking about autism is complicated – World Autism Awareness Week 1920 1280 Damian Beeley

If modern politics and the culture wars have taught us anything it’s that words and the way we talk about things really matter.

Talking about autism is complicated. We are using a catch-all term to describe a spectrum of individuals from Albert Einstein to those who are non-verbal, all with their own strengths and abilities, challenges, dreams and desires – just like everyone else.

The Center for Disease Control and Prevention (CDC) in the US describes autism as a “developmental disability caused by differences in the brain”. It goes on to outline how those with autism differ from neurotypical people. You can read the full definition and find out more about autism here.

The definition and the information is indisputably correct, based on statistics and research, but the way in which they talk about autism as a disability and a difference reinforces all the existing, deep-rooted ignorance, fear and prejudice that continues to surround the condition, and which continues to make the day-to-day experience of having autism, or being the parent of someone with autism, incredibly hard.

It denies the extraordinary power of the human brain, its unique individual abilities, the way it’s able to change, grow and develop and, perhaps most importantly of all, what difference has to teach us all about ourselves.

More and more children and adults are being diagnosed with autism, which is, on the whole, a good thing – although, anecdotally, the diagnostic process is not always rigorous and some, who should not be, are given a diagnosis while others, who should, are not. For children it means that their education and upbringing can be tailored to suit their needs making an unimaginable difference to their lives and the lives of their families. For adults it often helps to makes sense of lifelong challenges they have faced.

Much is made of increased numbers of people with autism with anxiety, depression and suicide. A 2019 meta-analysis found those with autism were four times more likely to have depression. Some of this is down to autistic characteristics such as repetitive negative thought patterns, but in my experience as a parent, discrimination and social stigma as well as the constant struggle to fit in with a world that can be so hostile, judgemental and unforgiving to difference are far more significant factors.

Successful, fulfilled, independent lives depend on a sense of purpose and connection which we largely derive from work. Everyone deserves the chance to build a life for themselves based on their occupation. But talking about autism as a disability is off-putting to employers, discouraging to those with autism and encourages the rest of us to ostracise them.

Temple Grandin, the American academic and animal behaviouralist, has had the most extraordinary life by any standards. It is worth reading everything she has to say, and watching the 2010 biopic starring Claire Danes, because it applies to all of us. But, as a parent of a daughter with autism, what I love and appreciate most about her is her fundamental approach that those with autism have “differently-abled brains”.