AutismAcceptanceMonth – Awareness is Not Enough

Tuesday 2nd April is World Autism Awareness Day, seen as a global opportunity to take action towards improving public awareness of Autism.

There are approximately 700,000 Autistic people in the United Kingdom. According to the National Autistic Society, 99.5% of the general population have heard of Autism, but only 16% of Autistic people feel that the public really understand them. The implications of this gap in understanding are felt in all aspects of our lives.

Autistic people are significantly underrepresented in employment; just one in six of us are in full time work, and yet over three quarters of those who are unemployed say they want to work. Employment will not be right for everyone on the spectrum, but many employers don’t understand that we can be well-skilled, highly qualified and employable. In addition to personal traits and individual strengths, it is very common for Autistic people to have excellent memory, attention to detail and ability to concentrate on a task for long periods.

While there are some challenges around social interaction and anxiety, these can be overcome by engaging with the employee to identify workplace adjustments. Such accommodations should be tailored to the individual’s needs; they are generally easy to implement and incur minimal costs. For example, the employee may be allowed to wear noise-cancelling headphones at work, or there may be a small amount of additional training for line managers to understand what communication styles will work for the individual.

Four in every five Autistic people feel socially isolated. The difficulties we face filtering out sounds, smells, sights and information can make us overwhelmed and anxious in busy public spaces. A ‘meltdown’ or ‘shutdown’ is an involuntary response to sensory overload. This behaviour can lead to us being labelled as naughty or anti-social. However, meltdown is different to a temper tantrum, and shutdown is not caused by shyness.

Most Autistic people have experienced judgmental attitudes, or even outright hostility while out in public. More than one in four of us have been asked to leave a public place because of autism-related behaviour. These attitudes impose pressure on us to mask our neurodivergent traits, in order to appear calm in uncomfortable situations. Only when we feel accepted are we free to embrace our Autistic identities and express our unique personalities.

Autistic people are living in poorer health and dying younger than our mainstream peers. This is partly due to a lack of understanding across the health and care systems, which creates significant inequalities in the healthcare we receive. A 2016 study from Norway found that people on the spectrum are more than twice as likely to die prematurely in almost all ‘cause-of-death categories’. It is widely known that mental health conditions are much more prevalent within the Autistic community; evidence suggests that stress related to social stigma is the reason behind this.

There are countless Autistic adults who have never received a diagnosis, perhaps recognising that they are different but not knowing why. They may have struggled through years of school, work and daily living without adequate support. They may be known to mental health or learning disability services, but a lack of Autism-specific knowledge among education and healthcare professionals can mean that their Autism goes unnoticed. Diagnosis is often a great ‘liberation’, which provides an explanation for many years of not fitting in.

For all the above reasons, we need to move beyond awareness and bridge the gap to meaningful understanding of how Autistic people experience the world. In light of this, Autistic self-advocates, our loved ones and allies are celebrating Autism Acceptance Month throughout April. This event is built on the neurodiversity paradigm; the belief that Autism is a ‘natural variation of the human experience’; a different way of thinking rather than a deficit.

You can help Autistic people by learning to recognise the challenges that we face, and how we may react in certain situations. If you’re not sure where to start, a National Autistic Society survey (2015) identified the top five things Autistic people and their families want others to understand about Autism:

  1. The need for extra processing time
  2. Anxiety in social situations
  3. Anxiety from unexpected changes or events
  4. Sensory overload
  5. That overload can lead to meltdowns

I am convinced that if everyone takes a little extra time to understand different ways of thinking, society will naturally become more positive and empathetic towards Autistic people. We all have the power to open up great possibilities for those who see, hear and experience the world differently.

Shropshire Disability Network, thanks Thomas for asking us if we can share his blog on our website

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