By Dr Rachel Moseley, a Bristol Soapbox Science Speaker
There are various taboo words we all avoid, but here’s a new one; do you know what I mean by the “A word”?
Many of you reading this may have tuned in recently to BBC One. There’s been a major BBC drama called ‘The A Word’ about a family whose little son is diagnosed with an autism spectrum condition (ASC). The drama followed the family through their initial anxiety about the child and their despair at his subsequent diagnosis, at the differences that had suddenly become glaringly obvious alongside other children. It focused on parents Alison and Paul coming to terms with a label they had never imagined confronting in their son. It’s a label which carries a lot of emotional baggage alongside the symptoms which will pop up if you research the word online: difficulties in social relationships and communication, understanding emotions and non-verbal behaviour; insistence on sameness, rigid and repetitive behaviours, obsessional interests. The National Autistic Society, the leading charity for autism in the UK, will tell you that it’s “a lifelong, developmental disability that affects how a person communicates with, and relates to, other people and the world around them”.
That’s pretty scary stuff to a parent sitting in a doctor’s office, and the programme paid homage to the feelings that parents and families often experience when a child is diagnosed with an ASC. A recent study surveyed the emotions that parents go through on hearing their child is on the autistic spectrum. Fernańdez-Alcántara et al. (2016) found that parents often feel a strong sense of grief at losing the child they thought they had.
There’s no doubt that the trajectory of a life is markedly different in people with autism. The condition may mean that certain milestones, like language, are reached late or not at all. Little things, like being invited to play with another child, may be monumental. The programme really captured the sense of loss that permeated family life and the worries of the parents for their child’s future, with that dreaded label. It received very good reviews from this quarter.
What, however, about other kinds of viewer? It was a diverse little collection at my home that evening as we sat down to watch the first episode. I’m a researcher trying to understand how people with autism think and experience the world by studying the brain. I was joined by my aunt and by my cousin, who has a form of autism called Asperger syndrome. As a scientist studying autism, my excitement slowly seeped away. The programme contained many common misconceptions which niggled uncomfortably at me and were frankly painful for my family, as these outdated beliefs only serve to retain the unhappy stigma and misunderstanding around autism.
I have no doubt the BBC had great intentions when they decided to air a drama about autism. Little Max Vento did a cracking job as five-year-old Joe, portraying a subtle and accurate presentation of what autism looks like in some children. Raising awareness can be a great thing – but spreading misconceptions can be greatly damaging for people with autism and their families.
As a scientist, I was concerned about several potentially harmful messages put forward by the programme. The organisers of Soapbox Science kindly offered me an opportunity to write about something I’m passionate about, so I’m nervously going to leap at the chance to replace some of the messages from the programme with some of my own. My cousin has kindly agreed to lend me a perspective from the spectrum, and my aunt to chip in with a few comments as to what it’s like raising an undiagnosed child with autism.
Autism is a neurodevelopmental condition: it’s visible in brain development from early life into adulthood
In a very touching episode, mother Alison experiences an unexpected warmth and closeness with her little autistic son. He’s suffering from the flu and is unusually cuddly and attentive. Very understandably, Alison relishes this bonding opportunity with her little boy. Her longing is heart-rending: “I could see the real Joe underneath all the autism”.
The idea that autism descends like a mist over a healthy personality is deeply misleading and utterly detrimental to understanding and assisting people with autism and their families. The programme talks about a ‘fever effect’, alluding to a study which found that mood and behavioural problems are less obvious when autistic children are ill (Curran et al, 2007). If anything, though, the fever state would be the anomaly, not the child’s usual behaviour.
Autism is very different from illnesses which are marked by a clear period of before and after. Although there are some cases where children appear to be developing normally before regressing in toddlerhood, many studies have found the signs of autism present in infants within the first 12 months.
Since autism is often diagnosed between ages two and three, how do scientists know which infants to look at before the signs are overtly obvious? Here, they often take advantage of the fact that infant siblings of people with autism have a much higher risk of having autism themselves. By following these ‘high risk’ cases from birth, scientists have found that those who do turn out to have autism show abnormal social behaviours from 6 months of age (Klin, Schultz and Jones, 2015). They may be less responsive to their names being called and less interested in their mothers and the social world around them.
What of those children who do seem to show a later trajectory of symptom development? These children also departed from the typical trajectory of language and social development by 14 months of age, according to Landa et al (2014). By 36 months, these researchers found early- and late-onset ASC to be indistinguishable.
My particular interest is in the brain; what’s happening there in early infanthood? It appears that even as early as six months old, these children later diagnosed with autism have brains that work differently from other six month olds, which are even different at a structural level.
The thing about the brain is that a little kink in even a tiny area is likely to have cascading effects which derail further development. Normal social development, for example, might be dependent on very early interest in other people. If someone is born with a biological difference which means that they’re less likely to look at other people, they will be slower to learn to talk; to understand other people’s minds; in other words, a whole chain of difficulties can progress from a little biological difference. As the brain develops, it develops along a different trajectory, with completely different wiring.
So how does the research relate to that comment about the ‘real person below all that autism’? Quite simply, it shows that autism is a part of a person from very, very early life and always will be. An autistic person’s symptoms and ‘presentation’ may change, may improve, but their autism is hard-wired within their brain and genetic makeup. It is difficult to impossible, and some people would say wrong, to try to separate the person from the unique manifestation of their autism. I’ll go into this further below.
Autism is unrelated to family traumas or ‘unresolved tension’
In a painful scene, we find the family sat around the kitchen table with their speech and language therapist, who’s sold as a bit of an autism specialist. She wants to talk about unresolved family tensions and traumas. I felt so sorry for the family as the normal difficulties that every family face were stripped bare. (It later turns out that there are unresolved tensions between mother Alison and the autism therapist herself).
This scene echoed with a dangerous and tragic precedent. For many years autism was blamed on cold and unresponsive parenting: ‘refrigerator mothers’. Bruno Bettelheim, who wrote about this topic in a book titled The Empty Fortress, suggested that “the precipitating factor in infantile autism is the parent’s wish that his child should not exist.” Distressed children turn inwards and away from their cold parents, utterly isolated and resembling the empty fortress of Bettelheim’s title.
When professionals blame neurological or mental illnesses on stress and conflict in the family, there’s a lot of the old “chicken-and-egg” problem about; as any parent knows, the tremendous worry about a child’s problems is likely to generate a lot of that stress and conflict itself. The A Word didn’t go as far as to make this accusation – there was just a strong suggestion that the stress in the family might play a causal role in Joe’s difficulties, as this was highlighted whilst biology never even got a mention.
But autism actually has one of the greatest genetic components of all psychiatric conditions (Persico and Napolioni, 2013). If your identical twin who shares your genetic makeup has autism, you’re 73-95% likely to be diagnosed with it too (studies differ on the precise likelihood). The chances dramatically drop if you’re a non-identical twin or a sibling brought up in the same family, but because you share some genes, you’re still much more likely to be diagnosed with autism than a non-related individual.
We still don’t know what causes autism, and it’s likely that there are many routes to these conditions. Prenatal or postnatal accidents are two possible routes, but it’s fair to say that the contribution of arguing parents and family tension to the development of autism is utterly minor if not completely non-existent. Watching The A Word, I had a strong desire to burst into the room and tell poor Alison and Paul that all they’d done was play the normal genetic lottery that all parents face. Family strife might be distressing for Joe and for the family themselves, but in no way is it related to the fact of his autism. I would have liked to have seen this pointed out in the programme, to definitively and once and for all rule out any blame that might still find its way to parents. As a scientist in 2016, I was deeply troubled by the programme including these scenes without a single mention of the completely blameless brain basis of these conditions.
Diagnosis isn’t always so straight forward
How is autism normally diagnosed? In The A Word, the family are whizzed through the National Health Service and their little boy is neatly labelled half way through the first episode. In reality, the route to diagnosis can be lengthy and require multiple professionals, consultations and assessments.
This is especially true for people with subtler presentations of ASC. Something very important to realise about autism is that people on the autism spectrum are every bit as varied as people off the spectrum. They share the same core symptoms but these appear in very different ways. One person’s social difficulties might manifest as being unable to make eye-contact or have trouble understanding if and when it’s socially appropriate to share. Another person might have learnt these rules in the same way that you or I might learn our times tables, but might find it really hard to intuitively feel when it’s their turn to speak in a conversation.
My particular interest is in autistic girls and women, and that’s something I’d like to bring to the public’s attention in my Soapbox talk. For many years, autism was very much associated with young boys (autistic adults got far less attention, but even reported adult cases were overwhelmingly male).
Autism does exist in girls; but it presents very differently and we don’t really know why. Autistic girls are often better at camouflaging their social difficulties and they tend to have special interests which are normal for little girls; their obsession with ponies or pop bands might just be a little beyond the norm, but are gender appropriate. They’re often the passive, quiet loners who may be adopted by other girls and allowed to exist at the fringe of a social group.
Their problems may become more apparent in the more socially demanding world of adolescence. The pain of not fitting in; many of us will know it, to an extent. Many undiagnosed girls and boys with ASC, bullied and ostracised within the peer group, become lonely adults who struggle with relationships at work and in their personal lives – always the odd one out, and never understanding why.
My cousin Michelle was diagnosed when she was 27, and it came as a tremendous relief for all of us. Chelle had always felt there was something wrong with her because she was different to all of her peers and couldn’t fit in. She often got into trouble with adults as she just didn’t seem to ‘get’ the rules. An experienced child psychologist suggested Asperger syndrome might be the reason. Her mother, my aunt, took her to a clinician who dismissed the possibility out of hand because Chelle, then 11, made eye contact with her throughout their short assessment. (We really appreciated that The A Word starred an autistic child who makes eye-contact!).
On to secondary school, and to those on the outside, it seemed like Chelle launched from one crisis to another. Bullied at school. Socially isolated. Self-harm. A stream of diagnoses: anxiety; depression; anorexia; borderline personality disorder? Psychiatric illnesses are common in ASC, and it’s quite normal for autistic girls to be missed or misdiagnosed (Gould and Ashton-Smith, 2011). All the pieces started fitting together when she was finally diagnosed. To Chelle, it was wonderful to know that actually there was a place she did fit in. The diagnosis allowed her to finally join support groups and meet people who understood.
The A Word showed one particular experience in which the parents were devastated by the diagnosis they were given. I feel the need to point out the other parents with whom I have so much empathy. Many parents push very hard to seek diagnoses for their (young or adult) children, as they open the gateway to support. To these parents, it’s an immense relief to get some recognition of the fact that they know there’s something different about their child. It was difficult viewing for my aunt, who was always dismissed as neurotic or worse: a bad parent with a naughty child. It’s the adult end of the spectrum whom I study, and through my research I’m keen to do something to prevent this kind of suffering and improve things for people with autism and their families.
Autism is not a dirty word
“I wouldn’t call anyone autistic,” said the A Word clinician in tones of horror, preferring the apparently less offensive ‘on the autism spectrum’. This sparked a hubbub of noise in my house as we all asked: why not?
The wording we use to describe autism is a highly contentious issue. Traditionally, clinicians and researchers have spoken about “people with autism” in the same way as we speak about people with diabetes, people with schizophrenia, people with cancer… through a medical lens, with that label as a nasty appendage on an otherwise healthy person, an affliction to be cured or prevented. In line with a broader disability movement, many people with autism, or rather, autistic people, prefer ‘identity first’ language. By saying ‘autistic person’ rather than ‘person with autism’, they argue that 1) autism is not intrinsically negative and 2) that autism cannot be subtracted from the person. It can’t be cured. It can’t be fixed, and nor should it have to be. (Many of these advocates argue against preventative research, too. They’d certainly have hated the programme’s comment about the real child behind the autism).
As I previously stated above, autism is part of that person from their earliest childhood. Autistic symptoms cause difficulty, as does the interaction of the outside world with those symptoms. Some individuals are profoundly disabled by their condition and deserve utmost support and assistance, along with their families. We don’t know yet why some people are more disabled than others, but autism truly isn’t universally negative.
It can bring beautiful quirks in personality, loving and genuine daughters, sons, sisters, brothers, and even mothers and fathers. People who can bring exceptional skills and strengths to the workplace, if only employers have the imagination to use them. People who can be utterly valuable and accepted members of society.
I asked my aunt whether she wished that Chelle didn’t have Asperger syndrome. She looked at me blankly, because Chelle is… all of her funny quirks, many of which do relate to Asperger syndrome. Her spectacular eye for detail even when she misses the bigger picture. Her ecstasies on seeing sparkly, flashing Christmas lights, and her need to touch fragile ornaments just to feel their cool, smooth surfaces. Her often amusing, literal understanding of language; her inability to lie; her endearing tendency to take stories and jokes seriously.
Sometimes she’s maddening in her pedantry, and she can’t walk along a beach without stopping every two seconds to pick up an unusual rock; she’s got a whole shelf full of stones which are indistinguishable to anyone else. But extract these things from Chelle and… who would she be? Part of Chelle’s ‘rehabilitation’ has been in learning that she isn’t a bad person and there isn’t something wrong with her. Some people have asthma and struggle to breathe; some people have diabetes and struggle to control their sugar levels; Chelle has Asperger syndrome and so she struggles with some aspects of daily life related to organisation and socialising.
I use both person-first (‘person with autism’) and identity-first (‘autistic person’) language in this article, but I respect the right of the individuals I write about to use whichever language they prefer. (It seems that the majority of autistic adults, family, friends and parents do prefer identity first language – ‘autistic person’ [Kenny et al, 2015] – despite what The A Word suggests). I’m absolutely passionate about neurodiversity, a perspective that autism is just one form, one type of mind that arises from the human brain.
This perspective recognises that although people share a lot in common, their brains are also spectacularly diverse and give rise to the different strengths and weaknesses seen in what are called ‘conditions’ or ‘disorders’. At its core, the movement champions the absolute worth of individuals of all neuro-types, most notably those who might in darker days have ended up in Bedlam. It promotes respect and compassion for all.
That’s why it was so painful for us, in The A Word, to hear the word “autistic” spoken with such denigration. To see the parents’ reluctance to tell others that their child had autism, even when his safety was at risk. Even the little play on words in the title stung, as autism shouldn’t fall in the ranks of the starred expletives that are banned from polite conversation. This isn’t all the fault of The A Word; it’s never clear how much the media influences or simply mirrors public knowledge and opinion.
The programme showed, however, that stigma and misinformation about autism is still rife, and neurodiversity is a long way away.
I’m going to be talking more about autism and the brain as part of my Soapbox Science talk on the 16th of July, and I’d love to invite you to come to speak to me. Please bring your friends and family for a natter. I’d love to tell you more about autism and neurodiversity. I’ll also tell you about your own brains; the fascinating way they create your personality and your world, the bizarre things that can happen when something goes wrong.
For the people who read this article but can’t make it to Bristol on the 16th of July – could I ask you, with greatest kindness, to carry away a few messages which are close to my heart?
Autism is genetic and biological; it has nothing to do with bad parenting. Autistic people are unique and valuable; autism isn’t necessarily a curse. We’re every one of us at the mercy of biology, the differences in the brain that give rise to our personalities, strengths and weaknesses.
The best kind of world would be one in which these are not derided but viewed with compassion and respect; the kind of world where we make space for individuals of all neurotypes. I really hope with all of my heart that through education and research, we can create such a world.