Dr Rachel Moseley is a lecturer at Bournemouth University, a researcher in cognitive neuroscience, and a keen advocate of public engagement in science. She feels passionately about working to improve understanding and compassion for people on the autism spectrum and those who live with mental health issues, and about embracing neurodiversity in all its forms. She will be taking part in Soapbox Science Milton Keynes on Saturday 29th July 2017.
Ten things I wish people knew about autism
By Dr Rachel Moseley
I’m counting down the days until the 29th of July… my day at Soapbox Science. I’m both terrified and exhilarated. I’m not completely new to Soapbox Science, having spoken last year in Bristol. I’m going to be talking a bit about the brain in general, but this year I also really want to take the opportunity to give a voice and dispel some myths that plague one group of vulnerable people in our society: people with autism spectrum conditions (ASC). (Note: some people prefer identity-first language, i.e. ‘autistic person’. I use both interchangeably but respect the right of individuals to use the format they prefer).
Autism is a neurodevelopmental condition with strong genetic contributions, which means that an individual sets off down a different developmental trajectory from the start regarding brain development (Hazlett et al, 2017). It will always be a part of that person; even if their symptoms change with their ability to adapt, their autism is written into their biology. You might have heard of Asperger syndrome, which is just one form of autism. When people talk about Asperger syndrome they tend to mean autistic people whose IQ is in the average to high range, and this is the group that I particularly work with.
I’m a cognitive neuroscientist by trade, which means that I study the brain basis of thoughts, emotions and behaviour. My particular interest in this field is in how autistic and non-autistic people differ. I’ve been looking at various things, like how the brain works during language processing, thinking about others, daydreaming and performing visual-spatial tasks. I’ve also been branching into other areas of autism research, such as sex differences and mental health in autism.
Autistic people and their families suffer a lot of stigma from some of the misconceptions floating around about autism. I feel passionately about trying to help increase understanding and compassion for those on the spectrum, so here are ten things I wish people knew about autism. I hope you’ll enjoy learning more and that you’ll come chat to me on the 29th in Milton Keynes
1. Rain Man and Sheldon Cooper (Big Bang Theory) are just cardboard cut-outs.
Stereotypes are very useful things in a complex social world. They simplify basic facts about a group of people in a way that allows us to identify and group them easily. We all know, however, how damaging stereotypes can be in that they reduce a mass of individuals into a homogenous group who are defined by few simple, broadly generalized features that are used as ‘rules of thumb’ for identifying them and making judgements. That’s just so with Sheldon and Rain Man. These guys are stereotypes which greatly simplify some basic facts about autism, for example the fact that autism is characterized by social difficulties and problems making relationships with others. Stereotypes are useful in some respects: they tap into a shared cultural idea of what autism is, and it’s helpful to bring everyone together to a common ground before trying to flesh out the reality of autism. The problems come when we start expecting to see Sheldon or Rain Man as soon as we know someone is autistic. Once we start looking at the real autism, throw away your stereotypes because autistic people are every bit as diverse as non-autistic people. Having autism is having a brain that works differently to those of non-autistic people – it’s a simple analogy, but a bit like different kind of operating system, like Windows to Macs. However, people with autism are exactly that – people, foremost, with autism just one element of who they are. Who they are as people you have to find out with respect and compassion.
2. ‘Unempathetic’ doesn’t mean cold and uncaring.
A lot of people believe that autistic people don’t have any empathy. It’s well documented that where non-autistic children are disturbed or upset by an adult’s pain and seek to comfort them, children with autism are less likely to respond and may continue playing with no concern. Likewise, autistic people may sometimes say things that come across as rude or harsh or insensitive and may not take the hint when someone gets upset. This apparent lack of concern for others has been interpreted as a lack of the ability to emphasise with them; to feel what they are feeling, to care. But this idea doesn’t sit well with new scientific evidence. One study found autistic children actually showed a heightened stress response to images of people in distress and some had to cover their eyes (Blair, 1999). Reports from people on the spectrum and practioners who work closely with them reveal that indeed, autistic people are often painfully upset by the problems of others (Smith, 2009). And as scientists now believe that emotions and empathy are necessary to develop a sense of morality (Prinz, 2006; Aaltola, 2013), how can we explain the fact that people with autism often have more keenly and strongly-held senses of morality if they lack these prerequisites? (De Vignemont et al, 2008). Perhaps it is our idea of ‘empathy’ that needs to be reconsidered: we need a model which recognizes that people may struggle to recognize the feelings of others but are capable of caring about them when they do (Baron-Cohem, 2009; Uzefovsky et al, 2015). When emotional information is explicitly presented to autistic people so that they don’t have to guess what the other person is feeling and why, they’re just as concerned and emotionally-affected as non-autistic people (Jones et al, 2010).
3. People with autism have emotions.
This one seems so basic that I hate to write it, but sadly it’s quite a common myth. It might stem from the fact that it’s sometimes quite hard to identify what people with autism are feeling. Some autistic people show very little change in emotional expression. Others have a normal amount of emotional expression in their face but the quality of it is odd, not the kind of expression you might expect for an emotion like ‘sad’ or ‘happy’ (McDonald et al, 1989; Moody et al, 2007). So not only is it hard for autistic people to recognize what others are feeling, but it’s also hard for non-autistic people to recognize what autistic people are feeling! It’s also extremely common for people with autism to experience alexithymia, a difficulty identifying and understanding how they feel (Bird and Cook, 2013). With alexithymia, one might feel the physiological ‘symptoms’ of fear – for example, sweating, heart pounding, nausea – but can’t put the emotional label on it. Therefore sometimes people with autism can’t express their emotions on their faces or in words. As you can imagine, this can be extremely difficult. Autistic people often struggle to express extreme emotions (Samson et al, 2012). This can result in what is known as a ‘shut down’ (sort of blocking everything out, literally shutting down: for example, clamping one’s hands over one’s ears, curling up, squeezing eyes shut and not responding) or, alternatively, in a ‘melt down’ (emotions exploding outwards in tears, shouting or screaming). Autistic people are sometimes aware what’s happening during a shut down or melt down, but not always. It can be an awful experience which is difficult to recover from.
4. People with autism aren’t loners who don’t want friends.
You definitely get a Sheldon vibe here, don’t you? But this stereotype belies the truth of what I mentioned above… that people with autism are every bit as diverse as non-autistic people, that autism is a part of who they are but only one part of their personality. Two psychologists in the 1970s found that there were huge differences in the sociability of autistic children. Wing and Gould (1979) found some children with severe intellectual disability who were pretty sociable and some who were not. In children without intellectual disability (who would therefore be classified as ‘high-functioning autistic’ or ‘Asperger syndrome’), they noticed that some children were ‘aloof’: they were pretty indifferent to the presence of others, especially other kids, and just approached others to get physical needs gratified. Others were ‘passive’: children who didn’t initiate social contact but were fine with other people approaching them and who were often brought into other childrens’ games. The last group, perhaps the saddest in a way, were ‘active but odd’: this was the group who really wanted social interaction and so constantly approached others with no idea how to interact with them. Their interactions were inappropriate because they were unaware of the feelings and interests of their interaction partner; they didn’t adapt their approach to the context or the identify of the other person and would often go on and on about their own interests. Autistic adults show similar diversity, and some are actually incredible social chameleons who figure out rules for how to interact with people in a positive way – they can be the life and soul of the party and may have an excellent sense of humour. Others are less able to modify their behavior so might still remain off-putting to others. This is extremely sad, because studies show that many autistic people are desperately lonely and would love to have friends (Bauminger and Kasari, 2000; Mazurek, 2014).
5. Autistic people are not all geniuses and they don’t all have special abilities.
It’s kind of a shame this one isn’t true, because who wouldn’t like to have an awesome party trick? It’s commonly assumed that autistic people will be geniuses in a particular field or have exceptional, extraordinary powers in art, music, memory, or so forth. Some do, certainly. There is a phenomenon called ‘savant syndrome’ which describes having an exceptional talent in the presence of a low IQ (Treffert, 2012). Rain Man is actually based on the real life case of a man with an encyclopedic memory of geography, music, literature, history, sports and other areas he’d read about (Peek and Hanson, 2008). This individual had memorized over 6000 books and had the incredibly useful ability to scan one page with one eye, the other page with the other – incredible! There’s some idea that perhaps 1 in 10 autistic people show some degree of savant skill (Treffert, 2012) – so still, even if it’s more common than in non-autistic people, it’s a very small minority. Likewise, autistic people exist who do have exceptional intelligence and prowess in a particular field (Fitzgerald, 2002; Boso et al, 2010). In many ways, the features of autism lend themselves to art, science, music or maths: specifically, the archetypal intense focus that people with autism show to their particular interests. This is known as ‘repetitive and restricted interests’ among scientists and clinicians, and describes the fact that people with autism will tend to get extremely interested, to an atypical degree, in particular subjects or objects. They then find it very easy to focus and involve themselves in that thing to the exclusion of all else. In many ways, research is the perfect environment for an autistic person! Ultimately, though, intelligence varies in autistic people just as it does in people without autism.
6. Girls and women can have autism too… but it looks very different.
For many years, autism was believed to be restricted to males only; it’s only recently that research attention has focused on autistic girls and women, and uncovered a whole population who’ve been suffering in silence. Problematically, it’s much harder for young girls to be diagnosed with autism (Lai et al, 2015): they need to have substantially more severe symptoms, and they tend to be diagnosed much later. In part this may be because gender stereotypes cast socially-impaired girls as ‘shy’ and socially-impaired boys as ‘unresponsive’ (Goldman, 2013). It can also be because autistic little girls are less likely to show disruptive behaviour. Whilst they have the typical autistic ‘restricted interests’, they tend to have special interests that are less eccentric and actually appropriate for their age and gender (for example, animals, boybands, soaps on TV). They are often exceptionally good mimics and do a great job of learning how to manage social interaction with studied strategies – underneath, though, they’re often highly anxious and have the same core problems with social understanding (Gould and Ashton-Smith, 2011). Quite often, autistic girls and women come to the attention of professionals when they come along with comorbid mental health problems, which are very common – depression, anxiety, OCD, eating disorders, substance abuse, personality disorders… it’s very common for autistic women (and indeed, higher-functioning autistic men) to accrue an impressive list of diagnoses before they’re finally identified as autistic. Unfortunately, professionals are just unaware of how differently autism presents in females, and it’s desperately important that we learn more about autistic girls and women, what they’re like and how to recognise them so that they get the support they need. This is one area in which my research focuses.
7. Autistic children become autistic adults.
This sounds really silly, but somehow, policy-makers and professionals seem to forget that autism is a neurodevelopmental condition which does not go away. Support services for autistic individuals dramatically drop off when they turn 18 (Gernhardt and Lainer, 2011), leaving them and their families in limbo without appropriate social or medical support. This group have a higher than normal rate of mental illnesses, yet we know very little about appropriate psychological treatments to help them (Bishop-Fitzpatrick et al, 2014). The National Autistic Society reported that in 2016, only 16% of autistic adults were in full-time paid employment, though 32% were in some kind of paid work. In 2012, only 10% of autistic adults were receiving any kind of support to find employment! Many autistic adults end up extremely isolated, with few or no friends, and many remain with their parents or families, unable to live independently. About 1.1% of the English population have an autism spectrum condition (Brugha et al, 2012: study funded by the Department of Health). This means that over 695,000 people will grow up with uncertain likelihood of receiving the support that would allow them to lead happy and fulfilled lives.
8. Parents: autism isn’t something you did wrong.
There have been some awful ideas about the cause of autism. The worst, in my view, was from Bruno Bettleheim, who published a book called ‘The Empty Fortress’ in 1967. In it, he suggested that autism was caused by cold and rejecting parenting, particularly from mothers. Tragically, so many parents suffered under this mantle of blame for a long time. We now know that autism has an extremely strong genetic basis. Literally hundreds of genetic mutations have been linked to increased risk of autism (De Rubeis et al, 2014), and these genes all do slightly different things; some of them affect the most basic way that brain cells function. Nonetheless, these studies show how difficult it is to pinpoint a genetic cause for autism: they show that there are many routes to the person’s end state as ‘autistic’, which may explain the huge diversity of autism. Autism is a condition rooted in biology and the brain – not in bad parenting. I want to mention, here, the recent emergence of anxiety about vaccinations and autism. This rumour causes untold damage not only to children who contract easily preventable diseases, but also to families with autistic children. Meta-analyses (e.g. Taylor et al, 2014) and autism experts have thoroughly debunked the original article linking autism and vaccinations – it was actually withdrawn due to the poor, inaccurate science that led to these claims. Let’s hope that this incredibly destructive myth is put to ground as fast as possible.
9. People with autism aren’t “making a fuss” or “making things up”
This one is really important. The brain seems to develop differently from the very beginning of life in autistic individuals (Hazlett et al, 2017). This isn’t a bad thing – remember the analogy above about different operating systems? – but since all of our behaviour, thoughts and emotions originate in the brain, we can expect autistic people to differ from non-autistic people. For example, it’s quite common for people with autism to be under-responsive to some sensations whereas others can be painfully heightened; a whisper can come across as a shout, unimportant sounds like the ticking of the clock can be impossible to block out whilst trying to attend to a lesson. Green et al (2013) exposed autistic and non-autistic teenagers to mildly aversive stimuli (a spinning colour wheel, increasingly loud white noise) whilst scanning their brains. Interestingly, the sensory parts of autistic teenagers’ brains showed increased activity to sensory stimulation, and this was related to their levels of anxiety and distressing sensory symptoms. What’s more, parts of the brain related to emotion and memory – the amygdala, the hippocampus and the prefrontal cortex – were also more active in the autistic teenagers. Some scientists suggest that the amygdala is like the brain’s early warning system; it detects threat in the environment, and makes sure that we remember it for future occasions. This implies that autistic individuals experienced these sensations as much more aversive and upsetting than non-autistic people. Social difficulties, difficulties with planning and decision-making, and other autistic symptomatology are linked with differences in brain connectivity and structure (Ameis and Catani, 2015; Keown et al, 2013; Hazlett et al, 2017) – mental health conditions like anxiety and depression, which are common in autism, are also rooted in differences in the chemicals and activity of the brain. For this reason, it’s so important to recognise that no one wants a mental illness and people who have one aren’t ‘giving in’ or being weak… mental illnesses are illnesses of the brain in the same way as tuberculosis is an illness of the lungs.
10. Autism isn’t necessarily something we should strive to eradicate.
Many people see autism as a disease to be cured. There are people who are so debilitated by their autistic symptoms that they would welcome the existence of a cure. There are families who find it exceptionally difficult to live with the challenges of autism. I believe that so long as a perspective does not harm others it must be given full credence, weight and respect, and the experiences of people with this perspective are valid and must be heard and held compassionately. I suppose what I have become very aware of, in my time researching in this field, is that this narrative is not the *only* one out there. Another perspective focuses on autistic people having brains that work differently from most people; brains that are different from the statistical average (literally, being in the minority). Asperger himself, who identified this syndrome, wrote: “Not everything that steps out of line, and thus ‘abnormal’, must necessarily be ‘inferior’”. This approach, in my view, recognizes the many strengths of autistic people and the contributions they can make to society, if supported to do so. Let’s think, for example, of the autistic eye for detail and single-minded focus. There’s been some speculation that Einstein had autism; although we can’t verify this, studies have shown that having a greater number of autistic traits is indeed linked with careers in science, technology, engineering and mathematics (Ruzich et al, 2015), and that students with autism are disproportionately likely to end up in these fields (Wei et al, 2013). For many autistic people, it would be impossible to extract their ‘autisticness’ without losing part of who they are: their kindness, their quirkiness, their honesty, and so forth; many lovely people would cease to exist. “Neurodiversity” is a frequently-touted word on the internet which, in my understanding, encapsulates this spirit of embracing, respecting, even celebrating the variety of human brain architecture which cause differences in thought, emotion and behaviour. This is not to undermine the real difficulties that autistic people experience living in a non-autistic world. I think this approach is *not* incompatible with research attempting to respectfully understand these differences and offer ways to alleviate the difficulties that can arise through problematic symptoms, helping the person to exist happily as they are, with their autism, rather than take it away (if such a thing was possible).
I feel that it’s really important that this second narrative is heard and respected just as much as the first. It’s important for the self-respect, self-esteem and dignity of autistic people. It’s important for non-autistic people, too, who may otherwise be blind to the many exceptional qualities and skills of people on the spectrum. Professor Tony Attwood, a renowned expert in Asperger Syndrome, called autistic people “bright threads in the tapestry of life”. If we ‘cured’ autism, how much we might be missing out on? Moreover, in a more inclusive society with greater support for autistic people as they grow into adulthood, who knows what we could stand to gain?
Thank you so much for reading this piece. Please come down and chat to me at Milton Keynes on the 29th of July, where I’d love to talk to you about autism and about the brain.