In spite of a far greater understanding of autism (previously known as Asperger’s) in recent years, society still seems to have some difficulty in accepting difference – and particularly when it comes to neurodiversity.
Asperger Syndrome is now more usually referred to as Autism Spectrum Disorder (ASD), after disturbing revelations about the wartime record of the Austrian psychiatrist Hans Asperger, who originally gave his name to the syndrome. In spite of this, many people who received a diagnosis of Asperger’s in the past prefer to continue to use the term as a useful description of a form of autism which is less severe and has often become part of their identity.
According to the World Health Organisation, about one in 100 children has autism, but it is often not diagnosed until adulthood. Typically, people with ASD have challenges in three social areas, known as the triad of impairments.
Firstly, they may have difficulties making friends, initiating and maintaining relationships, and understanding social rules. As we grow up, we learn social rules automatically without being specifically taught. For example, how close to stand to each other, when to start and end a conversation and how to maintain appropriate eye contact. Those with ASD do not learn these practices and can come across as rude or odd. In an effort to socialise, they may talk incessantly about their own topic of interest without picking up the cues that the listener is uninterested and indeed losing the will to live!
Eddie was a case in point. In order to start conversations and make friends he would talk about his favourite topic, Dr Who, at length. Naming each actor who played the Doctor in order, listing the episodes for each and naming the ‘enemies’ of his hero, he couldn’t pick up cues that others did not share his enthusiasm.
Like many people with ASD, Eddie tried to take part in conversations, but his responses often bore no relation to the comment that had gone before. Open questions like “How are you?” posed problems for him, and while, “Are you well?” could at least allow him to say, “Yes” or “No”, he did not understand that the normal response would be to say, “Yes” even if he felt poorly, so the questioner would often be told about his tummy upset or ingrowing toenail.
As well as difficulties expressing themselves, people with ASD can have difficulties interpreting facial expressions or tone of voice. As children, we learn to recognise when someone is surprised, angry or bored. This recognition does not come naturally to people with autism. Some parents and schools attempt to teach how to interpret expressions with the help of photos and social games.
Language is taken literally, meaning that jokes, idioms and common sayings are not understood. When told to “Pull your socks up” by a teacher, John did just that and of course was assumed to be being rude. Kara spent lunchtime searching for a base because her teaching assistant said that they should touch base after lunch. The good news is that idioms can be taught and their true meaning explained.
Many people with autism do not understand that others don’t share their thoughts or feelings. A mother with two sons with ASD realised that her third son did not have the syndrome when he came in from the garden to tell her that he’d dropped his biscuit in the sand pit. His older brothers would have assumed she knew, even though she couldn’t actually have seen it happen.
At school, her eldest son had read The Boy in the Striped Pyjamas, the story of the young son of a concentration camp commandant, who makes friends with a Jewish boy called Shmuel (the boy in the striped pyjamas) across the camp fence. The class spent two weeks reading and talking about the book. A homework question was to describe how the character Shmuel felt. Her son said that he felt cold because he was only wearing thin pyjamas; he lacked the insight to go further than that in his interpretation.
ASD individuals may face other challenges. Many have sensory issues – they may be oversensitive to light, sound, smells and textures, sometimes causing extreme discomfort and anxiety. Mark’s mother described how her son would scream with pain if he wore clothes with thick seams or large labels. An adult sufferer from the same condition likened the sensation of seams against the skin to being scraped with a razor blade.
Routine and order are deeply important to many people with autism and unexpected changes can cause real distress. A toy out of place, or a school bus that deviates from its usual route, can lead to a major meltdown.
Although some of the behaviours associated with ASD can lead to people being viewed as ‘odd’, paradoxically they can also be real assets. A fanatical attention to detail, in-depth study of a particular topic, the ability to see things differently, have contributed to the careers of many household names.
Chris Packham’s passion has led to him becoming a recognised authority on wildlife and conservation. Greta Thunberg has opened the world’s eyes to climate change – and many experts believe that scientists such as Einstein, Darwin and Newton may well have been on the autistic spectrum because of their specific interests and social difficulties.
Far from viewing ASD as a disability, society needs to recognise the unique and immensely positive contribution that many people on the autistic spectrum bring to their professions. Rather than valuing ‘sameness’, we should be understanding and celebrating difference, with all the positives and challenges that it can present.