Autism is fashionable. With prime time TV shows like the BBC’s The A-Word, Channel 4’s The Autistic Gardener and Atypical on Netflix, it seems fair to say that you could binge watch on autism to your heart’s content.
Television’s portrayal of autistic characters in central roles is also growing. We have Dr Sheldon Cooper in the Big Bang Theory (who greatly annoys many young people on the autistic spectrum) and Moss in The IT Crowd (who is popular in Asperger communities for being unashamedly comfortable in his own skin).
The main protagonists in the superb Scandinavian-noir detective series take it further. Saga Norén in The Bridge and Sara Lund in The Killing are complex female characters who are both clearly on the spectrum. So, too is Lisbeth Salander, aka The Girl with the Dragon Tattoo. They expose the myth that autism is predominantly a male condition. There’s even an autistic muppet in the form of Julia in Sesame Street.
These film and TV characters have raised the profile of autism and provoked discussion. That is to be welcomed. They have also shown people with autism and Asperger Syndrome in a positive light, in situations where their particular attributes and behaviours – typically deep concentration, single-mindedness, obsession with detail, computer skills and superb memories – save the day. It’s refreshing and life-affirming.
But TV shows are also misleading about the day-to-day reality. Unlike the depictions on screen – which suggest the condition is quirky, eccentric and even cute and cool – the truth is usually rather different.
People with the condition struggle with social interactions and social communication. They can appear lacking in empathy and self-absorbed when in fact they are struggling desperately to make sense of social situations. They want friends but they find making relationships bewildering and exhausting.
They also tend to experience high levels of anxiety and sensory overload as they become overwhelmed by the noise and bustle of everyday life.
The stress of trying to cope with the demands of a confusing world is enormous. These constant challenges can lead to anger, frustration and embarrassment which often manifest in meltdowns.
People who have the condition can often feel extremely isolated. A lack of understanding can lead to rejection and bullying. That in turn often results in low self-esteem, loneliness and intense anxiety. From there it’s a short step to school exclusion, unemployment and mental health issues ranging from anorexia, self-harm and OCD to depression and suicide. Sadly, that is not an exaggeration.
Fear of being judged for their behaviour can make it worse. Recent research shows that nearly half of autistic people and their families in Scotland are reluctant to go out because they’re worried about how people will react to their autism. A little awareness can greatly improve the quality of life for people on the spectrum. That goes for parents and siblings as well as teachers, care professionals, employers and politicians.
Making sure that young people with autism can succeed in life and reach their potential means access to education is vital. Despite the statutory obligation on the educational establishment to ‘get it right for every child’, the dogma of mainstream inclusion persists – even when it is clear that it can be a toxic environment for many on the spectrum.
Too many autistic children are unlawfully excluded from school or put on part-time timetables. Many can’t attend mainstream schools because of the stress and anxiety caused by getting lost, feeling overwhelmed, being bullied and being punished for autistic behaviour, such as needing to leave the classroom to calm themselves down or not participating fully in group work.
If politicians and educators get a little more awareness, they would realise that genuinely getting it right for every child can be transformative. The incredible achievements of specialist schools like The New School, Falkland House, Daldorch House and New Struan have made a huge difference to young people’s lives by creating safe, supportive and low-arousal environments.
They give them life skills, confidence, experiences, friendships and academic achievements. Yet there are hardly any of them despite the huge and growing demand. Of course, many young people with autism could thrive in mainstream education but only if their needs are taken into account.
In World Autism Awareness Week, it’s worth mentioning a few changes that would make an enormous difference to hundreds of thousands of autistic people and their families.
These include increasing the number of specialist teachers and the provision of appropriate placements for autistic children, while updating and refining teacher training to equip teachers with the skills and knowledge to understand and support autistic pupils.
It is also helpful to take a whole-school approach to raising awareness and understanding of pupils with additional support needs, including autism, while raising awareness among young people and their families about their rights to additional support for learning. If raising awareness helps achieve better outcomes for people with autism, then that would definitely merit a feel-good television show.
John Hatfield is an advisor to the National Autistic Society Scotland. He is appearing with Stuart Cosgrove tomorrow evening in A Conversation With Fathers About Autism at Whitespace, Edinburgh, at 6pm. Tickets from www.eventbrite.co.uk/e/a-conversation-with-fathers-about-autism-tickets-57273803488