A report on a talk by Alexis Quinn

How can we best support neurodivergent people, especially those with autism?

This was the challenge which author, speaker and campaigner Alexis Quinn took on in a talk at St Mark’s in July.

It is a challenge she takes on every day as an autistic person and the mother of two neurodivergent children and her talk was the product of lived experience and the latest research in the field of autism and support for autistic people.

At the moment support for autistic people is patchy if not entirely lacking in some areas.

Alexis looked at research into both children and adults with autism and the findings are alarming.

Children

Autism is the most common type of special educational need in schools, with the latest figures indicating that there are 182,493 autistic pupils in schools in England, the majority of them (73 per cent) in mainstream schools.

Teachers are therefore highly likely to have come across at least one autistic child but according to the National Autistic Society (NAS), only 14 per cent  of secondary school teachers have had more than half a day of autism training, and without appropriate teacher training, autistic children are twice as likely to be excluded from school. In fact, 74 per cent of parents said that their child’s school place did not meet that child’s needs and 54 per cent of children found that their teachers’ failure to understand them was the worst thing about school. And yet the Equality Act 2010 means that schools have a legal duty to make reasonable adjustments to things like the school environment and policies.

Adults

It doesn’t get better for adults. The disability employment gap (the difference between how many disabled people are in work compared to how many non-disabled people are in work) is wide, with around half of disabled people in work, compared with more than 80 per cent of non-disabled people. But the autism employment gap is even wider, with just 22 per cent of autistic people reported to be in paid work. There isn’t much opportunity for independence either with three-quarters of autistic people living with their parents, compared with 16 per cent of disabled people generally (ONS, 2021).

What is autism?

The NAS defines autism as “a lifelong developmental disability which affects how people communicate and interact with the world”. All people are different but generally, autistic people have difficulties interpreting verbal and non-verbal language like gestures or tone of voice, and they often have difficulty recognising or understanding other people’s feelings and intentions, and expressing their own emotions. This can make it very hard to navigate the social world. Alexis stressed that “when we take care of communication life is made a lot easier”.  For more details see box on page 19.

Autism and society

Alexis emphasised that autism is not an illness and does not need to be treated. It is simply a difference, part of normal human variation. However, this is not how society generally sees autism, and many people try to hide their autism by ‘masking’, suppressing behaviours which they may find soothing and mimicking others in order to fit in.

This seems to be especially the case for girls, but whatever gender, this is not healthy. Many autistic people feel the stigmatised and isolated, ‘othered’ by society and then they end up in what Alexis calls a ‘cycle of disconnection’. The results are alarming: 90 per cent of autistic people meet the clinical diagnostic criteria for anxiety and depression, and bullying and victimization leads to 61 per cent meeting the diagnostic criteria for PTSD. They are nine times more likely to die by suicide than neurotypical people and the average life expectancy for a ‘high-functioning’ autistic person is only 54. For a ‘low-functioning’ person that already low figure plumets to under 40.

Crisis

Why is this? Alexis herself masked and coped until a crisis point and this is common with autistic people. When crisis comes it can be impossible to mask or meet the demands of the environment. She had been a successful teacher and an international swimmer but once she needed help she ended up in a mental health and treatment unit. She describes her experiences in her book Unbroken, a terrifying description of a mental health system itself in crisis with little understanding of autism. What she thought was going to be a 72-hour rest turned into three and a half years in hospital, where she experienced sensory overload, restraint and seclusion until she took matters into her own hands and escaped to Africa. The book is an extraordinary and powerful read.

How to make a difference

Alexis now campaigns for better treatment for those with autism and challenges the way neurodivergent people are treated. She encourages people to think carefully about language which she describes as  “one of the most subtle but common forms of ableism…The language choices we make when talking about neurodiverse people can either maintain or challenge ableism.” Examples are: rather than saying someone is ‘suffering from autism’, we could talk about the ‘impact’ or ‘effect’ of autism, and rather than asking an autistic person “Why can’t you just…?”, we could ask “What can I do to support you?”.

These differences may seem slight but the cumulative effect of subtle hurts in language and the way people are treated can lead to increased marginalisation, bullying, poor mental health and trauma.

She is keen to encourage strategies to improve awareness of autism among non-autistic people which will not only improve the experience of autistic people but will also help lay the groundwork for a more accepting society.

Immediate steps

There are also lots of immediate steps that can be taken, especially in educational settings, including exit passes to leave classrooms if overwhelmed, quiet spaces to allow recuperation, uniform adjustments to reduce sensory discomfort and adjustments to classroom lighting and seating plans. These can go some way to reducing anxiety. Alexis explained that “when anxious the thinking brain — our executive functioning skills — can go offline and our emotional brain kicks in. We cannot pay attention, provide answers to a question, even speak, sit still or remain calm.”

She also outlined the importance of helping autistic children to report bullying and how schools can make this easier by, for instance, allowing autistic pupils to say what is happening by email or drawing, as communicating may be difficult.

Empathy works both ways

Finally Alexis pointed out that the burden of communication is usually put on autisic people. Both autistic and non-autistic people have difficulty understanding and ‘feeling’ each other because of their differing outlooks and experiences with the world but “empathy is a bidirectional phenomenon”, ie, it works both ways. Why is it that autistic people, the minority neurotype, are expected to do most of the adjusting? What can non-autistic people do to acknowledge and meet an autistic person’s desire for connection? Surely we can all develop new ways of relating?

What next?

There was time for questions after the talk with many people speaking from the lived experience of either being autistic or having autistic family and friends and there was a huge desire to carry on discussing ways of supporting each other. We are compiling a list of people who would like to be involved in some way and if you would like your name and contact details added, or to find out about other support or talks in the future, email revd.stella@badshotleaandhale.org

For more about Alexis click here.

Unbroken, learning to live beyond diagnosis by Alexis Quinn is published by Trigger Publishing.