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High functioning autism

May 24, 2019
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Autistic children

September 20, 2018
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Autism and vaccines

August 22, 2018
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Adult autism

March 07, 2018
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Autism In Africa

December 14, 2017
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Can monkeys have autism?

September 21, 2016
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High functioning autism

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At the risk of explaining the obvious to the neurotypicals - people not on the autistic spectrum - in the audience, I know that I am not every autistic person. I can only speak of my experience as a thirtysomething white cis man who grew up in semirural Hertfordshire.

This is still an autistic experience and, while it is not the same autistic experience as those of people you might know or people you have yet to meet, it is still a story that might help you to understand your autistic neighbors. 
"You don't seem autistic" is something that I hear a lot. 
There are a number of preconceptions about how I'm supposed to look, as well as what an autistic person is and is not capable of. 
When I ask what people mean by it, the response is usually that I "speak fluently" or "seem normal." 
Defining normal is a task for another social anthropologist. I am who I am because of my journey through life, and my current autistic self is a reflection of that journey.

<h2>Growing up with autism</h2>
I had a diagnosis of Asperger"s syndrome, or high functioning autism, when I was about 8 years old. Considering that this diagnosis came about in the "90s, it was an early diagnosis, compared to some of my peers".
I imagine that I was displaying most of the typical signs of autism: repetitive behavior, sensitivity to visual, audio, and tactile stimuli, narrow ranges of interest, and difficulties in understanding body language and the subtleties of social interaction.
The only unusual elements were that I engaged in imaginative play " an area that was supposed to be beyond my abilities " and that I wanted to engage with other people.
This led to a number of strange contradictions. Following an assessment, it came to light that I had a reading age of 18, but the professional opinion was that I wouldn"t be able to comprehend the contents of a fictional book.
<blockquote>I didn"t care that much at the time of my diagnosis. I was more interested in playing Sonic the Hedgehog, trying to get along with friends, and falling in love with the works of Terry Pratchett in my school library. My awareness of what autism was developed as I did.</blockquote>
Alongside my studies, I went to speech therapists and took part in a number of short "holidays" with others in similar situations, where I was encouraged to learn social skills through exercises and role play. I practiced and tried to put my knowledge to the test in the real world, where nobody follows the rules " of taking turns, being polite, and not talking over someone " that we had learned.
One common myth is that being autistic makes you antisocial. It doesn"t. I love meeting people, spending time with others, and having a laugh. I am a member of various role playing and board games groups, while I also attend a writing group that occasionally goes out drinking and a drinking group that occasionally writes.
One aspect of my autism is that I"m constantly trying to read everyone around me. 
I try to gauge moods that I might not be aware of and display the correct signs that I"m engaging with and wanting to take part in conversation.
It can take a lot out of me, and I need to spend a considerable amount of downtime unwinding and processing the events of the day. And yes, also getting to grips with the neuroses of any social faux pas that I may have committed. For example, one of my work colleagues has suffered from a number of bereavements. I want to show that I"m sympathetic and that I empathize with her to the point that my heart feels heavy, but I am completely disfluent when it comes to expressing this verbally.
I am envious of those around me who are able to naturally and casually approach her and offer support. Instead, I have to rush off to get myself a coffee and return with my thoughts in order at a later time. This is the pressure of being a high functioning autistic person. I have learned to portray the version of myself that a neurologically undiversified person would accept on a day to day basis, but when I am faced with difficult situations, I become unstuck. Unable to act appropriately, at best, and mute, frozen, or flapping, at worst. It is frustrating for neurotypical folk who know me at my best to try and understand this pressure. I find it just as frustrating.
This also extends to my online persona. I will have flurries of posts on social media before I become a ghost, haunting people"s feeds, slowly stockpiling determination until I can respond to messages and reach out to friends after days of silence.
This doesn"t mean that I am not trying. I love being around people, I just find it hard sometimes. I enjoy your company, even when I can"t show you. Before you ask " yes, I have tried yoga. I have taken part in yoga exercises as part of drama classes and student theater society meetings. I am inflexible, but I still enjoyed the exercises.
Yet, it doesn"t stop the anxiety that I experience on a daily basis. After a session, I am still autistic. I am simply less likely to injure myself in moderate exercise.
<blockquote>People have previously asked me whether I have a "superpower." I don"t have one. At least, not in the mold of those that are usually attributed to autism in fiction, like ultrafast computation or card counting.</blockquote>
I have an aptitude for a few subjects, and while I needed some extra time in exams, I performed well academically, attaining mostly As and Bs. While I managed to succeed in typically autistic subjects like maths and science, I really wanted to explore the arts.
Contrary to what professionals thought when I"d been diagnosed, I loved fiction and cultural critique. I decided that I wanted to study English literature at the University of Warwick. Not blessed with savant powers, I still needed mentoring and the use of a smart keyboard during lectures to help with my studies. I came out the other side with a 2:1.
Contrary to what professionals thought when I'd been diagnosed, I loved fiction and cultural critique. I spent 5 years trying to get short-term employment. I watched my peers on social media find jobs, get married, and make families, while I struggled to get an interview.
If I hadn"t been honest in my applications about being autistic, I might have made it to an interview room " but then I wouldn"t have received the support I needed to continue working. I tried to gain more experience and qualifications. My family supported me as I studied for an MA in writing and earned a distinction. I spent over 2 years volunteering in offices in order to gain the experience needed to break into a regular 9 to 5 job. I attended various job seeker"s courses run by the National Autistic Society and my local government. Yet it was still a struggle to get a foot in the door and into an interview.
I had my first paid internship in 2014 in a school finance company. I failed to get an interview for the journalism or web content internships within the business, but I was taken on as a finance intern.I still think this was based on the assumption that autistic people are "numbers and logic" people, but it was an opportunity to work, and it helped to prove that I was employable a year and a half down the line.I"m just about independent nowadays. Thanks to my parents, I have set myself up in a one bedroom flat.I mentally flit between my different anxieties about drifting out of contact with friends, about making sure my bills are paid on time, and about how the hell I am going to finish the novel that I have been writing for over 2 years.I no longer play Sonic the Hedgehog " I prefer my games to be angsty and plot driven now " but I am still the same autistic person that I was as a child. 
I have spent my life trying to empathize with the neurotypical population of the world, and I have given you a glimpse into what my life"s like. Empathy works both ways, though, and if there"s one concept that I want you to consider, I would like you to take this knowledge and think about how you can empathize with an autistic person moving forward. Think about ways that you can make autism-friendly adjustments at home, at work, or with that autistic person you are yet to meet.

Autistic children

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Autistic children are increasingly being suspended or expelled from school, because of "behavioural problems" official figures show. Some regions in the UK have seen a 100% increase in these types of exclusions since 2011.
Research carried out by myself and colleagues at Sheffield Hallam University demonstrates the devastating consequences these exclusions have for disabled children and their families. 
A landmark legal ruling in August stated that the exclusion of autistic children from school is a violation of their human rights. This decision by the upper tribunal should bring to a halt the alarming rise in the number of school exclusions of autistic pupils. 
Schools can no longer exclude pupils for aggression if this results from the pupil being autistic and is not, therefore, an act of choice.
<h2>Autism as a problem</h2>
The ruling means that schools are now legally obliged to make reasonable adjustments under the Equality Act 2010 to support autistic children whose behaviour they find challenging. 
But while the results of the tribunal are to be welcomed, some elements of the reported ruling reproduce the fundamental misrepresentation of autism that gives rise to these exclusions - for example, Judge Rowley asserted that: "aggressive behaviour is not a choice for children with autism". In doing so, Judge Rowley seems to imply that acting aggressively is an expected characteristic of being autistic.
Thinking about "problem" behaviour as a characteristic of autism has predominated within society since the condition was first formulated over 70 years ago. The American Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) sets out the personal characteristics that warrant a diagnosis of autism. This defines autistic people through terms such as "deficit" and "failure". Their behaviour is represented as abnormal and a problem: 
<blockquote>
Persistent deficits in social communication and social interaction "Deficits in social-emotional reciprocity" abnormal social approach and failure of normal back-and-forth conversation - inflexible adherence to routines.
</blockquote>
In this way, autism is made a personal problem with social rules and practices, as well as issues with communication and coping readily with change. Thinking of autism in this way has engendered a multi-million pound industry that depends on selling the idea that autistic children are in desperate need of a cure.
<h2>Misunderstood and misrepresented</h2>
This dominant mode of thinking about autism is often referred to as the Individual Model of Disability. This is the view that a person has a disability because in some critical way their body fails them. And it is this understanding of autism that is failing autistic children and young people. 
You only have to look at the issue of school exclusions, the prevalence of mental health issues and the disturbingly high level of suicides in autistic adults to know that it is time to think differently about autism.
Ask autistic people what the problem is and they won't answer that it is because there is something wrong with them. Instead they will tell you about how other people don't understand them and so reject and exclude them.
It is reported that only 16% of autistic adults in the UK are in full-time, paid employment. This is not because autism makes you unable to work. It is because employers have a very limited concept of what an employee should look like and how they should behave.
<h2>Wider acceptance</h2>
This is why the "problem" of autism needs to be reframed - making it less about the individual and more about the way society relates to and views autistic people. This approach is known as the Social Model of Disability. 
Through my research, I encourage education practitioners to shift from thinking about "problem" behaviour as a characteristic of autism. I ask them instead to reflect on how a child might be experiencing what is happening to them at school and why that might result in unwanted behaviours. To help with this, I offer practitioners an alternative, rights-based definition of autism to the deficit focused one presented by the DSM 5.
This still acknowledges the significance of the challenges that autistic people face. However, in this new definition, the responsibility and focus for change is placed with school practices rather than with the child. In this different way of thinking about autism it becomes defined as:
<blockquote>
Profound and fundamental challenges with: knowing and/or applying customary social rules and practices if these are not made clear; accessing commonly available communication systems; adapting quickly to unexpected and enforced change.
</blockquote>
It is critical to think about autism in terms of the need for schools to develop more responsive practices to meet a diverse range of pupils " rather than a fundamental problem with a child. Doing so will compel schools to recognise where the problem of behaviour really lies.

Autism In Africa

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Many African children with autism are hidden away at home – sometimes chained up, almost always undiagnosed. Efforts to bring the condition into the open are only just beginning. 
The eight-year-old girl’s head droops like a wilted flower as she sits slumped in a wooden chair in her mother’s kitchen. Her wrists are swollen from the dingy white shoelace that binds them behind her back. The girl’s mother, Aberu Demas, weeps as she unties her child.
Earlier that day, Demas had arrived unannounced at the Joy Centre for Autism in Addis Ababa, Ethiopia. A single mother living on the outskirts of town, Demas didn’t know what autism was or if her daughter, Fikirte, had it, but she was desperate for help. Fikirte could not speak or feed herself, and Demas had no family or friends to look after the girl when she needed to work or run errands.
It had taken Demas several hours to get to the centre by bus. Because she didn’t have an appointment, she had to wait about three hours until Zemi Yenus, the centre’s founder, could see her. The centre was at maximum capacity, so when they finally met, Yenus told Demas she could only put Fikirte on the waiting list. Demas began to cry, and confessed that she had left her daughter tied up and alone at home.
Yenus did a quick calculation: By the time Demas would get home, Fikirte would have been restrained for about eight hours, with no food, water or bathroom breaks. That was the end of the meeting: Yenus immediately drove Demas home to free Fikirte, and reassured the woman that she would make room for the girl at her school. Fikirte wasn’t the first child Yenus had seen in that state – and she wouldn’t be the last.
In the 10 years since then, Yenus says she has encountered hundreds of children locked away or tied up. Like Demas, many parents resort to these extreme measures because they have no other choice. Others hide their children, fearing stigma, which is pervasive in many parts of Africa and casts any disability as the sign of a curse.

Adult autism

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"He is wired differently to you and me, this child of mine. He doesn�t like loud noises, or dark spaces, or strangers touching his head". These are the first lines from a poem a mother penned about her son 11-year-old son who has Asperger�s syndrome.

Sophie Billington goes on to explain how her son Tristan�s brain works differently: "He can see in an instant the pattern, the layout, the solution to a puzzle", but that "the world judges" and "sees only the outbursts and over-reactions". It seems the poem struck a chord � going viral after being posted on Facebook.

Although autism is predominantly diagnosed in childhood, increasing numbers of adults are finding out that they too have autism. This issue, of later life diagnosis, was brought to light recently after nature photographer and TV presenter, Chris Packham, went .

About 1% of the adult population has been diagnosed as on the autism spectrum � with more people diagnosed with autism than ever before. And yet, generally, the focus on who has autism is still mostly on infants, children and young adults.

This is despite the fact that autism can be defined as a lifelong neurodevelopmental disorder � characterised by differences in social communication and interaction with people and wider society � making it very much a label for people of all ages.

<h2>Not just for children</h2>

There are currently about 700,000 people in the UK who have been diagnosed with autism, in some form or another. But of course, there may well be many more who meet the criteria of autism but have not been diagnosed.

For these people, they will not have received the care, benefits, support or advice that people with a diagnosis are given. Instead, the judgements made about their behaviour may well have led to marginalisation, anxiety and insecurity and self doubt about who they are and how they fit into society.

Mental illness can also be more common for people on the autism spectrum � with higher rates of anxiety disorders and depression. These issues may well have developed from experiences of bullying, at home or the workplace, and from being seen as "being a bit odd".

Then there is also the issue that since 2013, definitions of autism have changed. Now, Asperger�s Syndrome � one of several previously separate sub-types of autism � is no longer diagnosed separately, but amalgamated into "Autism Spectrum Disorders". This may make some adults feel alienated and unsure about what their diagnosis actually means � as well as what support they may receive.

<h2>Diagnosed as an adult</h2>

For some adults who are diagnosed later in life, it is likely they have already found ways to cope and be resilient in the face of discrimination and stereotyping.

But this is not always the case. Some adults with autism still face daily and lifelong battles to cope in their day-to-day lives. They may also find things like getting a job, meeting new people and having personal relationships really difficult.

The NHS website highlights that it might be a positive step to be diagnosed with autism as an adult � presumably because you may receive support, care and benefits. To what extent a person will actually receive this additional help is another issue. And given the increasing rates with which children and young people are being diagnosed with autism, it is likely that adults who are diagnosed later on, are going to struggle to access the support they really need.

<h2>Celebrating differences</h2>

Even when adults do get referred for an assessment for autism they are likely to face lengthy waits and processes � with clinical language being used that can be misunderstood. It can also tend to focus on the deficit rather than the skills of autism � such as creativity, expertise and talents.

In this way, then, people who come to an autism diagnosis later in life are likely to continue to experience mental health issues, alongside the stigma, prejudice and discrimination associated with people with learning disabilities.

There are of course many different viewpoints to understanding autism � whether they be from a purely medical perspective, or from a social perspective that takes into account cultural and political factors.

But rather than seeing autism just as a deficit or something that is "not normal" we need to see it as a way to think about how different people are. Because after all, it is through difference that we learn more, achieve more and add more substance to day-to-day life in society.

Autism and vaccines

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One of the most frustrating misperceptions in our many studies on what people commonly get wrong is the enduring myth that vaccines pose a risk to healthy children. It�s particularly maddening because it has direct and long-lasting consequences.

Public Health England recently warned young people to look out for symptoms of measles before attending a music festival in Essex. This was in response to 12 cases being identified in the county since July, way up on usual numbers. The rise reflects a broader trend. Measles cases in Europe increased fourfold in 2017, affecting more than 20,000 people and causing 35 deaths.

In the UK, the rise in cases is often among young adults, who were less likely to be immunised as children during a period of vaccine concern sparked by Andrew Wakefield�s now completely discredited claims that the MMR vaccine caused leaks in the gut that went through the bloodstream to the brain.

But new doubts keep being layered on, with points about freedom of choice from Italian political parties muddying the waters, and more than 20 tweets from the US president, Donald Trump, suggesting a link. This is despite many reviews that fail to find any link, including a 2014 meta-analysis of records from over 1.25m children.

Have these unfounded fears stuck with the public around the world? Our first ever multi-country study, in 38 nations, on vaccine misperceptions suggests they have. Around one in every five people believe that "some vaccines cause autism in healthy children", and 38% are unsure whether it is true or not.

The proportions positively believing it is true ranged from an incredible 44% in India, down to 8% in Spain.

But there are majorities in many countries who think it�s true or are unsure: in France it�s 65%, in Britain it�s 55%, in Italy it�s 52%. And even in countries where it�s not quite a majority who think it�s true or are unsure, it�s often only just below: in Sweden it�s 49% and in the US and Germany it�s 48%.

<h2>Why do we fear vaccines?</h2>

So why do three in five people across these countries feel unsure or believe that there actually is a link between some vaccines and autism in healthy children, despite the claims being so widely discredited? It is partly because it has many of the ingredients that drive conspiracy theories.

First, it�s a highly emotive issue � there is little more emotional than the health of our children. We treat information differently when we are in highly emotional states, being more sensitised and less considered or rational.

Second, it involves medical complexity and requires an understanding of risk, which we really struggle with. In particular, we need to understand the distinction between hazard, which is the potential for harm, and risk, which is the probability of that adverse outcome actually happening. For example, there is an incredibly small but real chance that a vaccine could aggravate an underlying mitochondrial disorder, which has been linked to regressive autism in a miniscule fraction of children. There are US court rulings that we could legitimately take as evidence of this being a hazard, but they are vanishingly rare, and the risk is therefore effectively non-existent. But that is a difficult point to communicate.

In addition, the communications we do see on vaccines are often actively unhelpful, with sections of the media keeping these stories alive. This does not just mean television shows or articles that give space to those who make the case for the vaccine�autism link without providing space for counter claims.

Then there is also a more subtle effect from "balanced" reporting. This is where a media item says that while a credible source disagrees with a position, some others still believe it. There is increasing evidence that this apparent balance actually serves to polarise, because we have directionally motivated reasoning, where we pick what we want from the evidence. Cass Sunstein, in studies on reactions to contradictory information on climate change, has called this "asymmetrical updating", where people take the information that fits with their views, and ignore the counter evidence.

The narrative across all these sources is also important. Stories stick with us, and there are a lot of individual case study claims in the vaccine�autism link. Jenny McCarthy, the model, actress and television presenter, is the highest profile "autism mom" and regularly explains how she�s told by "thousands" of other parents how, following vaccination, "I came home, he had a fever, he stopped speaking, and then he became autistic". Elevating these stories to be on a par with representative evidence, McCarthy says, without a hint of irony that "parents� anecdotal information is science-based information".

In these environments, the story takes over from reality. Paul Offit, a vaccine scientist, refuses to appear with McCarthy in media interviews, as he explains: "Every story has a hero, victim, and villain. McCarthy is the hero, her child is the victim � and that leaves one role for you."

The contrast with early days of vaccines couldn�t be greater. When Jonas Salk announced the results of his polio vaccine tests there were 16 television cameras filming the dry, academic presentation, relaying the outcome to 54,000 physicians across the country � judges even suspended trials so people could celebrate the results. It was as if a war had ended, said one observer.

In some ways, vaccines are a victim of their own success, because we are much more likely to notice phantom scares than world-changing but incremental improvements. We need to fight these frighteningly widespread vaccine misperceptions to avoid a much more attention-grabbing reverse.

Can monkeys have autism?

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When Kyoko Yoshida and his colleagues in Japan noticed one of their research monkeys was behaving strangely, they decided to study it more closely. They realised that some of the behaviour it was displaying � repetition, reduced social behaviours and an impaired ability to change behaviour in response to others� actions � bore similarities to autism spectrum disorder (ASD) in humans. They found more similarities with autistic humans when they studied the monkey�s DNA.

Yet autism is a developmental condition defined by types of behaviour that are almost wholly unique to human beings. So is it really possible for a monkey to have autism? The new research from the Japanese team might not fully answer that question. But it does suggest that studying monkeys may help us understand what�s going on in the brains of people with autism and identify the causes of the condition.

There are good reasons to believe autism is an inherently human condition. The diagnosis of autism rests on abnormalities of those nonverbal types of behaviour that we use in social interaction to influence each others� states of mind. This includes gestures, directed facial expressions and showing behaviours such as pointing.

<h2>Human condition</h2>

Autism is also closely associated with delays in language development, which is perhaps the most impressive human sensorimotor skill (involving senses and physical movement). Other types of autistic behaviours include those characterised by the ability to follow and direct another person�s focus of attention. This is arguably the most human of cognitive abilities and seen least in non-human primates.

But none of this means that non-human animals couldn�t have impaired neural mechanisms that are similar to those that occur in autistic humans, even if they cause more simple behavioural problems in the animals.

One idea about what causes autism is the mirror neuron hypothesis, which I advanced with co-authors back in 2001. Mirror neurons are a part of the brain first discovered in monkeys that activates when animals (including humans) perform certain actions and when they see others doing the same actions. Our theory was that when these mirror neurons didn�t work properly it could affect the ability to watch someone and judge what they were trying to do from their actions.

We proposed that the neural mechanisms the brain uses for sensorimotor learning (which includes the mirror neurons) are also used to understand other people�s actions and so to empathise with them. If these mechanisms are impaired then it is harder to infer what people�s intentions are from what they say and do. "Predictive coding models" extend this idea to explain how disrupted sensorimotor learning results in the heightened sensory awareness often experienced by people with autism, as well as repetitive behaviours that produce desirable sensations.

Macaque monkeys, like the one studied by Kyoko Yoshida, may not be very capable of inferring intentions, but we can still predict some effects of impaired mirror neuron function on their social behaviour.

Yoshida tested the monkey�s abilities using a simplified version of the Wisconsin Card Sorting Task, which involves matching picture cards according to the numbers, colours or shapes they represent. The rules for how to match the cards change throughout the game and the player has to guess how they have changed by trial and error. Just as occurs in people with autism, the monkey did not adapt its behaviour in response to watching another monkey following a new rule. The researchers also found that the monkey showed decreased socially affiliative behaviours (presenting himself for grooming or mounting).

As our theory would predict, the monkey did indeed have reduced numbers of mirror-type neurons. The researchers also found it had genetic variants that have been associated with autism, notably in a gene related to serotonin function, which has long been linked to the condition.

<h2>Not enough for a diagnosis</h2>

In their paper, the researchers said that they "considered that Monkey E had a particular disorder that could be called psychiatric, similar to human ASD". As a psychiatrist, I am not particularly impressed with nail-biting, decreased social interaction and reduced performance in a single behavioural task being seen as enough to diagnose autism. Personally, I would be looking for a much more detailed description of social and repetitive behaviours throughout development.

But in principle, this research shows monkeys can display behaviour that is similar to that seen in humans with autism. What�s more, the common patterns of brain disruptions seen in both monkeys and humans are linked to genetic differences associated with autism in humans.

The approach taken by the researchers will be invaluable if it allows us to trace and define the long and complex path from genetics through neurophysiology to autistic behaviour. This could then explain how genetic differences cause the condition. What�s more, if it confirms that the way that the brain adapts its motor-control systems for social behaviour is the key process affected by autism, we will have found a promising target for therapy.

Language

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Words matter. The way we use them to communicate with or about others can have a huge impact on people�s lives. This is especially the case when it comes to disability. Handicapped. Retarded. Mad. Activists have campaigned hard to eradicate such terms, which are offensive and perpetuate a negative view of disabled people � one as passive, unable to take control over their own lives.

Responding to this demand, recent government guidelines have encouraged clinicians and teachers to use positive and inclusive language, including the use of language that does not define people by their disability.

�Person-first� language has become what�s called for: that is, calling someone a �person with autism� � describing what a person has, not what a person is. This has become the recommended way to speak with or about disability � in the press, journal articles, hospitals and schools.

It is difficult not to see the good intentions behind this approach. But perhaps it is not really as inclusive as it claims to be.

Many disabled people have argued vehemently against the use of �person-first� language, instead preferring �disability-first� language, such as he or she is an �autistic person�. Nowhere is this issue more hotly debated than the field of autism. Many autistic activists argue that person-first language is dehumanising, as if they can somehow be separated from their autism, that there is a �typical� person affected by autism, rather than a person whose life is in part defined by being autistic.

These are difficult questions. But it is surely not difficult to argue that truly inclusive language should be defined by the people who are actually autistic. Not by well-meaning outsiders, no matter how powerful. Take a look at the #actuallyautistic and #describingautism twitter handles to see some of these debates.

<h2>Not right for everyone</h2>

Recently, together with the National Autistic Society, my colleagues and I asked 3,470 autistic people, parents and their broader support network, about the words they use to describe themselves, their children or the people with whom they work. Did they prefer to use �autistic person�? Or �person with autism�? Or �person who has autism�?

The results clearly showed that people use many terms when talking about autism. The words �autism� and �on the autism spectrum� were clear favourites among all the groups added together. But there was much disagreement on the use of several words and phrases. Professionals preferred to use �person with autism� while autistic adults and family members preferred on the whole to use �is autistic�. They thought that the term allowed them to describe the centrality of autism to their lives.

One autistic woman said:

<blockquote>
In describing someone who�s autistic as �a person with autism/person who has autism/(or worst of all) person who suffers from autism� you imply that autism is separate from a person, and behind their autism is a �normal� person.
</blockquote>

<h2>Agree to disagree</h2>

But these preferences were not unanimous, of course. Instead, for autistic people, family members and professionals, the words they used often hinged on what people believed autism to be. Those who felt that autism is one trait of many in a person tended to prefer person-first language. Others, who felt that autism is central to their or their child�s identity, opted to use �autistic�. Others still noted the need to use different words depending on whom one is speaking to.

There is no one way of describing autism on which everyone can agree. There never will be. In order to answer who the question of who gets to decide which terms should be used, first, everyone connected to autism needs to come to accept the fact of disagreement and to respond to it with openness, flexibility and tolerance of divergence of opinion. We should always seek to establish how people wish to be described � by asking them directly, if possible � and not impose external views or guidelines upon them.

Perhaps even more importantly, we need to create the conditions for debate and conversation between all of the people who are touched by autism and work in the field. It is, after all, only when we listen to each other that we discover what individual words are taken to mean and why they often matter so much.

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