Until We Have Answers – Glass meets Autistica’s Chief Executive, Jon Spiers, to find out how this organisation has become Europe’s leading charity for autism research
IF you walk into a room of 88 children, the chances are that least one of them is autistic. If you look at a graph showing how these statistics have changed throughout the past decades, you’ll see more cases of autism now than ever before. In autism research there is still speculation as to whether these numbers represent an epidemic of autism or if it simply means that more cases have been reported because of the fact that we now know what autism looks like – a testament to how important autism research is.
But one of the difficulties in autism research is that this lifelong disability – which affects a person’s ability to communicate and relate to others, as well as the to the world around them – is not just one thing. Partially thanks to a growing awareness of the issue, research has concluded that autism is a spectrum of disorders ranging through extremely different degrees of sociability and communication skills. Despite ongoing studies, there is still a set of huge, unanswered questions, such as what causes autism.
In 1994, the British medical publication The Lancet published an article by a group of medical researchers led by Dr Andrew Wakefield which linked MMR vaccinations with the development of autism, and although that report was subsequently discredited, proved fraudulent and retracted – with Wakefield having his medical licence revoked – there has been an ongoing paranoia among certain populations who refuse to vaccinate their children for fear of autism.
UK-based charity Autistica was founded in 2004 and is leading a major effort into funding and campaigning for medical research to understand the causes of autism, to improve diagnosis and to develop new treatments. They have established themselves as Europe’s largest and leading autism research charity and have raised over £8.5m for research. Here we speak with Autistica’s Chief Executive, Jon Spiers, to discuss the difficulties for people dealing with autism, stereotypes and the disease’s macro, unanswered questions.
Autistica’s goal is to fund science which will lead to change. What types of change are you aiming to provoke?
Autistica’s mission is to build longer, healthier and happier lives for everyone affected by autism. As the UK’s national autism research charity, we are focused on funding the new science which will lead to a better understanding of autism and to new, proven treatments. But while funding science which will lead to effective treatments is an essential part of our work, we are also campaigning for change in other areas. In 2016, we released a shocking report showing that autistic people die earlier than non-autistic people from nearly all causes. As an outcome of this report and through our lobbying, we have secured new commitments from the UK and US governments to improve quality of life and reduce premature mortality among autistic adults.
We also evaluate how research can be used to improve quality of life for autistic people. For example, only 16 per cent of autistic people are in work and, with many talented autistic people being overlooked, we decided to implement a trial of autism internships with our corporate partner Deutsche Bank. We produced a compelling report which raises awareness of the needs and talents of autistic people, and we will use this research to approach businesses to change perceptions of autistic people and, we hope, increase employment opportunities. As the bridge between researchers, policymakers and people affected by autism, it is our responsibility to ensure that we are constantly fighting for the right changes that will give everyone affected by autism what all of us want – a long, healthy and happy life.
What makes Autistica different from other groups working in autism research?
Autistica’s research is led by the autism community – that is autistic adults, their families and professionals working in the field of autism, and this is actually quite a new approach. Many research organisations set their own research strategy, but ours is dictated by who we see as the true experts – those living with autism every day of their lives.
This approach has meant that our research is starting to gain more interest within the autism community, as well as with science funders and policy makers. We are now Europe’s largest and leading autism research charity and with this increased influence, our research is already starting to translate into new services and policies that will help build brighter futures for autistic people.
So what are the challenges of conducting research for autism?
One of the most prominent challenges for autism research is that it is a spectrum disorder. At opposite ends of the diagnostic spectrum, an autistic person may have few or no words, or they may have no difficulties with language whatsoever but still require support in very specific areas. Even at the same end of the spectrum, the complexities of autism are not reflected. Two individuals who may sit at one end may differ completely in terms of their strengths, weaknesses and the level of support they require. This poses fundamental challenges for research, but researchers are increasingly recognising the need for individualised approaches in autism.
You often talk about “neurodiversity”, this idea that there is a natural spectrum of human brain variation. How does that help understand autism?
First, we are all neurodiverse as no two brains are the same. This is because our individual brains develop in a unique way based on the particular genes we carry and environmental factors we are exposed to. With reference to autism, what is perceived within society as “normal” is what falls within the average range on this spectrum. Understanding autism within the concept of neurodiversity is empowering because it reframes autism and emphasises that it is just a spectrum of human variation and is not synonymous with abnormality – just difference.
Sociability and communication are two of the biggest challenges for autistic individuals. There’s a general understanding that someone who is unable to communicate ‘normally’ will be unable to perform in society and have a good quality of life. Does your research also look to find ways to help autistic people develop their own methods of communication?
Interestingly, there are examples of autistic people with limited verbal ability developing their own methods of communication. For example, Naoki Higashida, a 13-year-old Japanese boy with non-verbal autism, has written the books The Reason I Jump and Fall Down 7 Times Get Up 8 which have been translated by bestselling author David Mitchell. The books give us valuable insight into the mind of a minimally verbal autistic person. Everyone’s autism is different and Naoki has found a way to communicate to write his books with the help of an alphabet grid. Consequently, he offers a valuable understanding into his mind and fosters a greater understanding of autism.
This year, Autistica is focusing on language and communication by investing in a unique programme of research which will find proven ways to improve language and communication skills – some perhaps using novel technologies which we hope can supplement the efforts of speech therapists and teachers cheaply and accessibly. Other methods might take existing language aids used in other contexts and explore how to make them autism-appropriate, meaning we can leapfrog years of development.
It’s very political, autism. In part, we need a wider, more modern understanding of the different ways we as humans can relate to each other and communicate. What is Autistica’s stance in helping inform governmental policy so that people with autism aren’t portrayed as not-normal but rather helping society understand that, just like deaf people, autism represents alternative forms of communication – perhaps even its own language?
Autistic people are indeed still subject to stereotypes, misunderstanding and insensitive terminology. Whenever we engage with the government we speak in the language of neurodiversity and we talk about autistic people, never patients. We are working with several members of parliament to act as Neurodiversity Champions within the UK Parliament so that we can raise awareness and normalise differences.
Currently we’re working with the Royal College of General Practitioners and other healthcare professionals to help NHS services communicate more effectively with autistic people. We have also met with the Home Office Digital Team to discuss the work that they’re doing to make their online services more accessible to people with autism or attention deficit hyperactivity disorder.
Just as importantly, we focus our work within government on priorities identified by the autism community. Those priorities include tackling mental health in autism, addressing ageing with autism, assisting autistic people to demonstrate their strength to employers and helping people with language and communication difficulties. These aren’t just topics we fund research into – they are issues we campaign on too. For example, later this year we will be launching a campaign to raise awareness of the number one priority identified by autistic people and their families – mental health – across Westminster and Whitehall.
Like any condition affecting well-being and quality of life, it not only has an effect on the individual, but on the family as well – in fact, in the UK alone, it’s estimated that about three million people are directly and indirectly affected by autism. How does Autistica approach the familial aspect of autism?
We know that a great deal of education, care and support comes down to families, friends and colleagues, so the work we do very much reflects that. We know that parents of autistic children often struggle with the stigma attached to their child’s diagnosis, and the behaviours that they display. Parents whose children have recently received a diagnosis of autism are particularly vulnerable to these feelings which can lead them to withdraw from social situations and isolate themselves.
To better support parents, we have launched a study at the University of Bedfordshire which will develop and evaluate the first ever “stigma protection intervention” for autism carers during and/or immediately after diagnosis. The ten-week programme includes a combination of group experience sharing and skills-training to improve parents’ mental well-being, self-esteem and resilience. If it’s successful, we will push for this sort of programme to be accessible via the NHS throughout the UK.
Diagnosis of autism is mostly done through behavioural tests. I would think that parents might suspect their child is autistic when they seek medical evaluation, but it must still be difficult to process. In your experience with Autistica, how do parents of autistic children usually cope the moment the diagnosis is delivered?
Unlike many other conditions, there is no definitive test for autism and as a spectrum condition it can be hard to diagnose. Partly due to this, diagnosis typically occurs around the age of five in the UK, and by this point most parents will have fought hard, for years, to get a diagnosis as they see their child developing differently from other children. We’re often told by parents that the point of diagnosis should feel like a relief, as they expect answers and treatment options. However, the reality is very different.
Many are only given a leaflet, sent home with few answers and left alone to research autism on the internet and find their own pathway through the conflating statements and various, non-scientific offers of treatments. Too often, parents fall prey to charlatans on the internet, touting fake or unproven treatments for autism – some may just be a harmless (though often expensive) vitamin mix but others can be much more harmful.
As a charity which is so closely linked to the community we serve, it’s exceptionally difficult to hear of the struggles parents go through at diagnosis. It’s clear that the lack of information and direction given to parents needs to be addressed and that is why we are launching an autism gateway this September. The gateway will be an internet hub, accessible to everyone for free, and will house information about autism, research, proven treatments, advice and signpost services. We hope that the gateway will be a safe place where every parent with a newly diagnosed child will turn to find the answers they need.
As I understand it, the cost for autism treatment exceeds that for cancer?
Most autistic individuals will need to be supported at various points in their life and many with the most profound levels of need will require lifetime support, often involving a team of carers. Contributions from the state and the loss of potential earnings from the autistic individual, carers and parents lead to estimates that autism costs the UK £32bn each year. In comparison, on average only £4m is invested in the autism research which could ease care costs.
What are some of the big questions about autism that researchers working with Autistica are trying to answer? What are autism’s big questions.
There are many gaps in our knowledge of autism. While scientists have focused on genetics and improving our understanding of why some children are autistic and others are not, the big questions for the autism community surround mental health. There is a dramatically increased rate of mental health issues in autism and suicide is one of autism’s biggest killers. But we still don’t know why. This is one area which we are focused on increasing research to improve our knowledge and subsequently find autism-appropriate treatments.
There are also very big questions around ageing in autism: what does autism look like as people age, what do autistic people need to be supported in later life, and how can we pick up the hundreds of thousands of adults who were never diagnosed as children? As autism is neurodevelopmental, and many autistic people are diagnosed in childhood, questions about adulthood have until now been tragically neglected. Autistica funds work at Newcastle University which is leading the way into answering these questions.
Autism, like so many other conditions, is charged with social stigmas. But some autistic men and women also have certain abilities and extraordinary perceptions that allow them to create alternative understandings and interpretations of the world around us. Is there any truth to this? Mozart, for instance, was said to be autistic, as was Andy Warhol.
The types of trait you mention are often referred to as “savant” abilities. This is where someone may have unusually strong abilities, often in a very specific area, such as memory or mathematical skill, yet profound impairments in other areas. Savant syndrome is frequently associated with autism – for example, the lead character in the film Rain Man – but is relatively rare among autistic people. In fact, savant syndrome may affect only around 10 per cent of autistic people.
And what about synaesthesia?
Synaesthesia is a perceptual experience where a person may report the blending of two or more senses – for example, experiencing colours in response to musical tonality, or “tasting” the days of the week. Seen through the lens of neurodiversity, synaesthesia, like autism, is a natural part of human variation, which falls outside the typical range of experience. Research suggests that autistic people are more likely to experience synaesthesia but it’s not a well understood phenomenon.
The arts and humanities are usually underfunded and seen as less vital to scientific research. But in fact, the arts are instrumental in providing autistic children with modes of communication. In the US, for instance, there are now budget cuts to how much the government will be supporting the arts and humanities, something which is culturally detrimental and scientifically as well. What is Autistica’s approach to the arts and how much value do they hold for the work you do?
Because the autistic mind works quite differently from a “neurotypical” mind, autistic people can be incredibly creative. They can be good at seeing things that others don’t, and can be brilliant at thinking outside the box. The increased attention to detail and methodical way of working that many autistic people display can also lend itself to certain disciplines in the art world. Last year we hosted an event during Frieze London week which celebrated autistic artists alongside mainstream artists.
Artists such as Jon Adams, who is autistic and has synaesthesia, exhibited alongside established artists who shared similar levels of attention to details. The event attracted a large number of visitors, many of whom commented on how refreshing it was to see art from a marginalised group within a mainstream exhibition rather than standing alone with disability as a defining feature. We also supported a series of workshops for young autistic playwrights which culminated in a performance at the Royal Court Theatre, London, last month.
We feel it’s incredibly important to both address the challenges and highlight the strengths of autistic people. Events like this art exhibition and the graduate employment scheme we recently launched with our corporate partner Deutsche Bank, show the world that autistic people can bring huge talent to society, if only we embrace their differences.
by Regner Ramos
From Glass Issue 31 – Patience
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