29/03/2018 13:10 BST | Updated 29/03/2018 13:10 BST

Autism Understood: Our Listening And Our Language Is What Counts Now

Oli Monks
What do you understand about autism?

NOTE: With World Autism Awareness Day 2018 coming up shortly, I want to make sure that the maximum platform is given to those actually in the autistic community. I’ll keep this post short and do my best to signpost to further information with an authentic autistic voice behind it.

I have a younger brother who is autistic but never really engaged with autism much until after I was 18. Before then, I still remember grappling with countless awkward moments overhearing descriptions of autism that weren’t just a different perspective but instead wildly off the mark on anyone’s radar. This was all through the lens of a protective older brother and at that time in my life, I definitely lacked the courage and conviction to do anything about it.

I’ve been on an educational journey since then (one which I am still very much on) in my professional life where I’ve been supporting autistic adults into and in employment.

One major learning which keeps coming through though is an incredibly simple one: at all times, listen to the individual. A revolutionary thought.

Autism is a spectrum condition, approximately 1 in every 100 of us are autistic and it will mean something different to every autistic individual that you speak to. Where we fall down so often in building support that works is by making assumptions when we need not to. So often it is the effort for autistic people to adapt to the systems we’ve already created that is the most exhausting. The examples are endless, from how our health services are designed to the traditional recruitment and interview processes which still dominate how businesses hire - I could go on and on.

The more that we listen and give real time to listen, the more we can also give the autistic community the understanding and respect they deserve with our language in return. There is greater positive intention from a neurotypical perspective – myself included - but we can do better, can’t we? Just think about how our services, businesses and autistic community could benefit if we did.

I’ve found that my own understanding of autism has grown through the diversity of voices and perspectives I’ve been able listen to. In 2018, it seems as if we all want to understand everything in its simplest form, the single story. That is undoubtedly the most dangerous approach.

Only within the past year have I learnt how offensive the phrase “person with autism” could be to someone who is autistic. A phrase I ignorantly will have used for years beforehand without a second thought. I now make a point to use the preferred language of that individual.

Jon Adams, a poet, artist and autistic campaigner wrote this recently on identity-first language:

Until we change the traditionally used wording towards autistic people to the preferred language used by autistic people, the stigma and othering I feel will not stop. I don’t ‘live with autism’ for a start, I actually live with my wife and two cats. I didn’t ‘acquire autism’, it’s not a handbag or a pair of shoes. I don’t ‘suffer from autism’, I just have to suffer the attitudes of people who seek to misrepresent me or plainly don’t understand the harm they cause us. I do however live with and suffer from PTSD caused by poor attitudes towards me as an autistic person.

You can read the extended piece here:

With that in mind, we are surely all now aware of autism. Isn’t it right to change our focus from awareness to something much more like understanding and acceptance?

Interested or inspired? Here are a few ideas on how you can you do something now:

  • If you speak to someone autistic in your office, family or somewhere else, listen to them. Are you using language that could be offensive?
  • Search the #actuallyautistic on Twitter, it’s full of a lot of insight and debate on autism by people who are autistic. I am frequently on it and have always found it to be a helpful resource.
  • For more on language and autism, I’d recommend reading the blogs of Jack Welch and Jon Adams who write far more extensively on the topic
  • Finally, be positive. Much of the conversation on autism drifts to what autistic people cannot do. What about focussing on their strengths?