World Autism Awareness Week 2021

Michael Fullerton, Director of Health and Wellbeing at Achieve together, shares his thoughts.

As World Autism Awareness Week begins, myself and Stephen Adamson have been chatting about this together, and also as part of a wider group with other autistic people during our ConnectAT chats.

Myself and Stephen have known each other for some years now, we’ve worked together on various sports projects, played football together and enjoyed some great times socially. I admire Stephen a lot, and his achievements – gaining a sports coaching qualification from Tottenham Hotspur Foundation, and going on to lead gentle exercise classes, walking football and Walk n Talk groups for people with learning disabilities and/or autism. Stephen lives in South Norwood and has been supported by Achieve together for a number of years. He is autistic, and when I need advice and guidance about supporting autistic people, Stephen is one of my ‘go to’ people.

While we chatted together about autism awareness week, and then within the ConnectAT chat there was an overwhelming sense of why in 2021 do we need an autism awareness week, why are people generally not aware, all of the time. Surely with the numbers of people who are autistic that within our educational system, employment systems and generally in society we should be more aware. As the parent of a young female who is autistic I can see often challenges with people in education, in leisure and sports groups not always being aware of autism – and especially appreciating the differences in autism in girls.

As a parent and advocate this requires frequent explanations, reminders and pleas to understand my daughter’s unique and ‘quirky’ needs. A challenge for my daughter, Stephen and others is their social and sensory differences are ‘invisible’ i.e. they aren’t immediately apparent and rely on others to pick up that there are difficulties. When discussing these points with Stephen and others, what was common was:

  • Diagnosis later in life, for some people in their late teens or later.
  • People don’t want to be treated differently, but do want their differences to be understood and respected, and reasonable adjustments made in social situations, formal settings, employment, education etc. This allows people to cope, get on in life and to have good mental health.
  • People can be treated disrespectfully or even bullied as children and young people, because they seem ‘different’ in social situations and these experiences can have a lasting impact.
  • People who are autistic may struggle with making and keeping friends, and may find it hard to trust new people – an example discussed was sometimes a difficulty trusting new support team members. This should not be seen as the person being disrespectful to the new supporter, but needing time to get to know the person.
  • While people who are autistic might often prefer their own company, this does not stop them feeling lonely. So consideration that a person might be lonely is important. This is one of the beauties of the ConnectAT chats, people having a virtual means of connecting at this time when social interactions are more restricted.
  • A few people mentioned feeling like ‘outsiders’, and in a couple of instances feeling frustrated as their siblings were not autistic and doing things that they felt they couldn’t do.
  • One person spoke about her experience of finding the world to be a scary place so she is afraid of going out on her own. She finds it difficult to make friends and understand people, because people are not always clear about their intentions and with their words. She finds it hard to tell when people are joking or not. She finds it hard to trust people, because it is difficult to tell if someone wants to be a real friend or just pretending – she has been hurt in the past and is afraid of being hurt like that again. She is proud of her abilities at arts & crafts and ice-skating and that she is always kind and caring to other people. One thing she would like the general population to know about autism is that people need to be clear when speaking to someone with autism, because they might easily misunderstand or take something to heart.

When asking Stephen and others about the positives of autism, everyone struggled to answer that, it required some thought and that is similar to when any of us are asked what our positive attributes are. We often find it difficult to express our positives, but we did gain qualities such as real technical and artistic creativity, people who stick to social rules (handy during the pandemic!), people who are sensitive to others and hugely kind and respectful.

I would add that as I mentioned earlier I have huge respect for Stephen as I know what he has achieved and overcome despite his social anxieties – he has faced his fears head-on, and supported others to enhance their health and wellbeing through exercise and sport. For Stephen, my daughter and others who are autistic, let’s make awareness of autism a wide commitment in all aspects of life – and for longer than a week.

Many thanks