Understanding autism: we still have a long way to go – Article

Readers respond to a piece by John Harris about moving beyond an awareness of the condition to practical steps to help those living with it

A jigsaw puzzle of a heart shape on the human brain.
‘Being different to the majority is hard. Being judged for that is reprehensible.’ Photograph: ThitareeSarmkasat/Getty Images/iStockphoto
 

John Harris is right (Enough ‘autism awareness’. The necessity now is action, 13 June). It is now time that we had some action to improve lives for autistic people. Is it time to move on from autism awareness, though? I think not. Without a general knowledge of what constitutes autism and what people with autism live with, and without an understanding that each person with autism is different and will need a unique approach, there will be no useful action.

I work for families who have an autistic child and who are worried about their experience of school. This work is largely in mainstream schools, where the majority of children with autism are educated. Generally, the effort made by the school to understand both the condition and how it affects their particular pupil is dismal.

Thankfully, I visit two schools, both in less advantaged areas of London, who manage it beautifully. They clearly take pleasure in their autistic pupils; they have been open to training and have really been a champion for these pupils and their families. These two schools, who make my heart sing, give me the courage to go into other schools and encourage them that it can be done. But it is generally not. I suspect that every school in the land, if asked, would say that they are autism aware. Yet their awareness is nowhere near a level that is helpful to an autistic child attending school each day. These schools do not take reasonable action either because they do not have the knowledge and information needed, or because they really do not want to welcome this child and help them to thrive.
Jude Ragan
Cheltenham, Gloucestershire

 Never has a truer word been written or spoken than those of the headline on John Harris’s article. Many people claim they have received “autism awareness” training. They sadly then believe they understand autism. I have two generations diagnosed with autism in my immediate family. Despite this, I would never claim to fully understand the way an autistic brain works or processes information. I still make mistakes in my interactions, although rarely now, having worked hard on my own language and communication.

I am not neurodivergent, unlike them, but together we have delivered training to NHS professionals, including the Royal College of Psychiatrists, with a view to improving understanding. The “theoretical” view of autism worries us profoundly, because it is too often mistaken.

Statements that autistic people “lack empathy” are simply not valid; just because someone may not be able to express their feelings in our accepted way doesn’t mean they don’t possess them. People on the autistic spectrum have many different presentations and strengths to be admired. They are loyal, honest and follow rules, surely traits to applaud. Being different to the majority is hard. Being judged for that is reprehensible.
Ann Moore
Stocksfield, Northumberland

 John Harris’s piece was excellent – as far as it went. He’s right that the film The Reason I Jump is brilliant, and he’s right that it’s time for action. But you cannot support autistic people unless you identify them. To do that, health professionals and teachers must learn how to listen to, and identify, troubled kids.

It is increasingly clear that there are a large number of girls who are not identified. It is well known that girls mask their autism. Our younger daughter, Colette, was diagnosed only at 33, despite the fact that she’d been under psychiatric care since the age of 12. She was missed. That’s why my wife and I wrote the book Why Can’t You Hear Me? It’s about our daughter’s struggle to be heard.

Colette died an avoidable death aged 35, but she left behind much extraordinary and compelling writing and brilliant art, which are featured in the book. Her writing is a testament to autistic people’s creativity.
Andy McCulloch
London

 A wholehearted thanks to John Harris for his article on autism. The National Theatre is to be commended for its eye-catching promise to audition and support autistic actors. The same kind of support is required for non-acting roles in the workplace in general if we are ever to get beyond only 15% of people on the spectrum finding work. Neurodiverse people have much to offer employers, but they cannot be expected to compete directly with others.

Employers have to therefore positively discriminate to recruit them and give them the necessary support to do the job. This is what an enlightened retail employer has done for someone I know, transforming her life in the process.
Carole Tongue
London

Read more here:Understanding autism: we still have a long way to go | Letters | The Guardian

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