Wednesday 2 April this year is World Autism Day. As a parent with a son on the autism spectrum, I’m interested in understanding how people on the autism spectrum can be commonly misunderstood and how to communicate better.
To investigate, I had conversations with our son, and also spoke to other people on the spectrum, with some of their parents. I’ve concluded that there are some very simple errors we can avoid which impede our communication with people on the spectrum, and some very simple things we can do to rectify this.
Autism – misunderstanding the spectrum
As a parent, I’m constantly learning and trying to improve my understanding of how an ‘autistic ‘ person sees things. My conversations with my small sample of interviewees showed surprising similarities in the answers when I asked how autism is misunderstood.
The National Autistic Society website defines some characteristics for a diagnosis. These can include:
- Different communication styles. They may use/understand words, tone of voice and body language differently.
- They may have different behaviours and interests; for example, a very strong passion for a hobby or a topic, repeated movements and behaviour, a preference for order and routine (for example, wanting to know in great detail about a topic, for rules to be the same for everyone and having the same routine).
- Different sensory processing. They can be much more or less sensitive than non-autistic people to the five senses, as well as senses for balance, movement, spatial awareness and internal states (for example, hunger and temperature).
Our son, for example, experiences severe sensory distress in overly warm rooms – an issue when he works in an office heated to tropical temperatures. Thankfully, our old and draughty house solves this issue at home.
One parent I spoke to said: “When my son was diagnosed as a child, I tried to explain to him that some computers run on Windows, but the Mac runs on iOS. Both achieve the same functions, but with different operating systems.” I think that this is an extremely helpful analogy. (As apparently did her son!)
We’re all individuals – there are no stereotypes
The biggest mistake I feel we make is to forget that autism is a spectrum and that no individual autistic person conforms to a stereotype. When I asked: “What is the biggest mistake people make in understanding your world?”, responses started with the very simple “They think I ‘m stupid”, but with a similar theme underpinning all. One said: “We are going through a lot and it’s very difficult. We are intelligent and capable of many things.”
I interviewed Jason, an autism and disabilities campaigner. He has a YouTube channel called Quebber, where he vlogs about his life and the issues he faces. He was diagnosed with Autistic Spectrum Disorder with comorbidities of ADHD and bipolar disorder. He told me: “I had five different experts trying to help. Everything they suggested made things worse. Their ideas contradicted each other and took no account of who I was. I’m seriously introverted, so recommending I attend group therapy or take myself to the pub is my idea of hell.”
Jason was finally helped by a therapist who surprised him with his comments. “After reading my notes he asked me: ‘How are you still here?’ My therapist explained that he had seen people commit suicide with far fewer challenges than me, so the fact I hadn’t done so implied that I must be doing something that worked. He took the trouble to find out exactly what made me tick and helped me to identify what was successful for me before suggesting strategies.”
This, to me, is a key conclusion. Autism is a spectrum, so we must learn the unique set of characteristics that our individual autistic family members and friends have and not pigeonhole them into a single category.
Technology helps – understanding the autistic world
My next question to explore was how we can interact more effectively with people on the spectrum. My conclusion is that this is intrinsically linked to our deeper understanding of their individual characteristics (as mentioned before), to learn to adapt our own behaviour.
I’m not suggesting this as another pigeonhole, but all of the small sample of people with autism I spoke to are keen gamers. Jason’s explanation is: “I like gaming because I can understand the world of the game. It works in accordance with what I would expect. I don’t understand how the ‘real’ world works, but in games I do good things and get good consequences, and bad consequences if I do badly. Though games are ‘unreal’, they are far more understandable to me than your world.” Another comment was: “Computer games provide consistency and a defined set of rules that you can figure out as you play. The problem with the real world, is that even if we figure out the rules, they are either frequently changed, have inexplicable exceptions, or people choose not to follow them.”
Technology in general seems to figure heavily in the lives of my interviewees. Jason described to me how he has technology to hand even while he sleeps. If he is woken by an idea, he can record his thoughts there and then, enabling him to relax and sleep again.
Jason would struggle to leave the house due to anxiety, but he describes how having a mobility scooter grounds him, and he can happily go about town while recording his unscripted vlogs on topics of interest to him. “I’m talking to you on speakerphone now, as I don’t like holding my phone, and I have a hand free to operate my fidget spinner too.”
How to communicate better
My interviews taught me some simple lessons for how neurotypical people can better interact with autistic friends and family members. Key to me is first recognising that there is no autism stereotype. We must take the time to enquire and dig deeper into how the world looks to our autistic friends. I personally try to say ‘on the autism spectrum’ instead of ‘autistic’. It reminds me that each and every one is unique. As one interviewee said: “Give me time and get to know me before judging me.” My son also pointed out that if you know someone is autistic it never hurts to ask them for their preference for how you describe them.
Secondly, we can make more effort to fully explore the world as our friends see it. Jason pleaded: “Take the time please to dig deeper into my world. Understand what is special to me. I may go into a topic in what for you is excessive detail but hear me out please and take the trouble to hear it from my point of view.”
I humbly suggest that this is something that we all can try, to make the world better for our friends and loved ones who are on the spectrum. Thank you to Jason and my anonymous interlocutors for allowing me into your world and increasing my knowledge. I have learned from you and am grateful.
