Autistic' or 'with autism'? - Why the way general practitioners view and talk about autism matters - RACGP
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Focus | Viewpoint ‘Autistic’ or ‘with autism’? Why the way general practitioners view and talk about autism matters Pia Bradshaw, Claire Pickett, While knowledge of autism has receive an autism diagnosis in adulthood Mieke L van Driel, Katie Brooker, improved, stigma, stereotypes and are initially overlooked, dismissed, not Anna Urbanowicz misinformation remain. believed or misdiagnosed,9,10 as was the It was not long ago that the increasing case of the primary author of this article. number of autism diagnoses was described This may be because they often do not Pia Bradshaw (pictured) is Autistic and attention as an ‘epidemic’.6–8 Nowadays, the clearly meet current diagnostic criteria, deficit hyperactivity disorder (ADHD) and an autism health researcher and PhD student in increase in prevalence rates is attributed which are modelled on the experiences of Medical Sciences, and Claire Pickett is an to better understanding of the condition male children. They may have different Autistic general practitioner. and a greater ability to identify and interests to the male stereotype (eg trains, diagnose it, among other factors. This timetables, numbers), such as reading MANY GENERAL PRACTITIONERS (GPs) have is certainly the case with many adults, fiction, creative writing, makeup, video not received training on autism spectrum particularly females, who were overlooked games or true crime. Previous prevalence condition (hereafter ‘autism’),1–3 and even in childhood and received an autism estimates of four males to every one if they have, it is likely there are still areas diagnosis later in life, as was the case of female have been determined to be closer in which they would like further training the primary author of this article, who was to 3:1, and as close as 2:1 for those with an or do not feel confident. diagnosed at the age of 30 years. However, accompanying intellectual disability.11 It is estimated that one in 59 people is on the common misconception that autism Autistic adults report social the autism spectrum;4 therefore, Autistic ‘looks’ a particular, outwardly obvious way camouflaging or masking their authentic adults, whether formally diagnosed or not, remains a significant barrier to accessing Autistic behaviours to avoid standing out or will at some point attend general practice. and receiving an autism diagnosis. It is having their differences draw attention.12,13 Studies show GPs self-report low levels of widely understood among the Autistic Camouflaging or masking is used to confidence in treating Autistic patients and community that GPs, psychiatrists, compensate for aspects of social interaction adapting their practice to meet the needs psychologists and autism ‘experts’ often that do not come naturally to hide one’s of these patients.3 GPs most commonly conflate autism with intellectual disability, authentic Autistic behaviours.14 Authentic report low confidence in communicating which is an entirely separate condition; Autistic behaviours include expressing with Autistic patients, performing only 30% of Autistic people have a themselves freely without shame or physical examinations or procedures, co-occurring intellectual disability.4 reproach, and self-stimulatory behaviour and accurately diagnosing and treating The longstanding myth that autism is (known as ‘stimming’) such as singing, other medical issues. Additionally, a condition that mainly affects children is dancing, making noises, repeating phrases GPs have low confidence in helping apparent in the lack of available supports from TV or movies (known as ‘echolalia’).15 patients remain calm and comfortable and services for Autistic adults. Autism is As a result of common misconceptions, during consultations, identifying a lifelong neurodevelopmental difference, stereotypes and misinformation about accommodation needs and making and Autistic children grow into Autistic autism, some Autistic people are cautious changes to accommodate such needs.5 adults. Many females who go on to about or avoid disclosing their diagnosis 104 Reprinted from AJGP Vol. 50, No. 3, March 2021 © The Royal Australian College of General Practitioners 2021
‘Autistic’ or ‘with autism’? Why the way general practitioners view and talk about autism matters Focus | Viewpoint to healthcare providers, employers, diagnosis,24,25 its erroneous continued use Autism should be viewed as a spectrum landlords and friends or family in fear among health professionals and autism condition comprising different language, of discrimination or because of previous researchers has made it synonymous sensory, executive function, perception negative experiences with disclosing with expectations of better functional and motor skills, whereby every Autistic their diagnosis.16 skills and long-term outcomes despite person possesses a unique profile The aim of this viewpoint article is to: contradictory clinical observations.22 with varying degrees of strengths and • introduce basic concepts about autism Classifying Autistic people into levels challenges in each category; this profile and challenge stereotypes and using high- and low-functioning is fluid across the lifespan (Figure 1). • introduce neurodiversity and autism labels fails to capture the critical fact Language should focus on specific support from the perspective of two Autistic that autism is not static, but rather needs rather than ‘severity’. adults – PB is Autistic and attention fluid in nature (Figure 1).26 The skills There’s an expression, ‘If you’ve met one deficit hyperactivity disorder (ADHD) and capabilities of an Autistic person Autistic person, you’ve met one Autistic and an autism health researcher and will develop throughout their lifespan. person’. This expression reflects the unique PhD student in Medical Sciences, Therefore, it is unlikely that health and varied nature of autism because no and CP is an Autistic GP professionals can predict the long-term two Autistic people are the same. They • provide background knowledge to outcomes and capabilities of Autistic may share similar traits, but ultimately respectfully engage with Autistic people with any certainty. Alternatively, their cognitive profiles (eg executive individuals. learning from the lived experiences of functioning, language, perception etc) will Autistic adults provides invaluable insight determine where their strengths lie and into the neurobiological responses that what areas are challenging and require A paradigm challenging medical shape the behaviours and the strengths additional supports. models: Neurodiversity and challenges of Autistic people. The Autistic community has adopted Additionally, functioning labels the neurodiversity paradigm, which fail to capture the varying day-to-day Why the way we talk about accepts the biological fact of neurological capacity of Autistic people’s ability to autism matters diversity among humans and the view respond to and manage the demands It is imperative for health professionals, that no one type is more valid, healthy and responsibilities of adulthood when and broader society, to listen to and or right than another.17 It challenges faced with sensory stimuli, environmental understand the experiences of Autistic the prevailing notion of pathologising stressors, communicative differences and people to then understand the reasoning neurodiverse brains, and it instead views health challenges. Using autism levels behind the language and terms used to diversity through the lens of a social and functioning labels overlooks the real describe them in a respectful manner. model of disability whereby societal challenges and barriers of Autistic people Health professionals tend to use ‘with barriers are key factors that disable who may not outwardly appear different, autism’ because they are taught to use people.18 The Autistic community and minimises the strengths, abilities and person-first language during their training. applies the concept of neurodiversity to capacities of those who do. Traditionally, person-first language, how autism is viewed, and challenges The continued classification of autism which is the recognition of the person the dominant assumption that autism levels and functioning labels by health first and that any condition or disability is a disease or disorder and should professionals, autism researchers and is secondary to their identity, has been be eradicated, prevented, treated or broader society counters efforts to better the dominant language to use when cured.17,19–21 An analogy to describe educate people with an updated knowledge discussing disability. However, when autism is: just because a PlayStation of scientific research, and be equipped discussing autism, the Autistic community cannot read an Xbox game does not mean with the necessary skills to meet the needs advocates for the use of identity-first it is broken or has a processing error – it is of Autistic patients. Indeed, the use of language. An Autistic brain cannot be just a different operating system. such terminology is harmful to Autistic separated from an Autistic person as it people, their supporters and/or loved ones defines the way in which they perceive because it reinforces the stigma, myths the world. A deaf person is not described Conceptualising autism as linear and misinformation that create barriers for as someone with ‘deafness’ – they are and binary is a misnomer Autistic people and prevents the acceptance ‘deaf ’. The Autistic community does not The autism spectrum is often of Autistic people within society. see themselves as disordered and is proud conceptualised as a linear concept As Adam Walton, an Autistic of their neurology. Despite this, in the using high- or low-functioning labels self-advocate, says so eloquently:27 Diagnostic and statistical manual of mental and understood as something whereby disorders, fifth edition, autism is still an individual would experience autism [So-called] mild autism doesn’t mean coded as ‘autism spectrum disorder’, and either mildly or severely.22,23 Although one experiences autism mildly … It means the International classification of diseases, ‘high-functioning autism’ is not a formal YOU experience their autism mildly. 11th revision, groups autism under © The Royal Australian College of General Practitioners 2021 Reprinted from AJGP Vol. 50, No. 3, March 2021 105
Focus | Viewpoint ‘Autistic’ or ‘with autism’? Why the way general practitioners view and talk about autism matters ‘pervasive developmental disorders’, so a non-Autistic person. Non-Autistic and words on parents of newly diagnosed the of use ‘disordered’ terminology will interpretations of autism are narrow and children, family members, newly diagnosed appear in formal diagnoses, reports and limited, as non-Autistic people do not Autistic people of any age and supporters services.24,25,28 However, not all Autistic have the ability to see, experience and who seek information and support. people will use the same language and ultimately understand autism to the same Speaking to an Autistic patient/family terms (a small proportion of Autistic extent as Autistic people do through their using deficits-based language that infers people may use ‘with autism’), and some lived experience. Likewise, although that autism is attached to what would be may use the language of their diagnosis, non-Autistic people provide important an otherwise healthy brain teaches people so it is always best to ask the patient their contributions and supports to Autistic to view themselves or their loved one as personal preference. people (eg scientific advancements broken, a burden and someone/something Until recently, the narrative of autism about the brain, and the important roles to be endured or fixed. This perpetuates has been shaped without the voices relatives, supporters and/or friends have), an erroneous and unhelpful narrative to of Autistic people themselves; as a the Autistic community needs greater Autistic individuals, parents and supporters result, important aspects are missing. involvement in the priority setting of as well as the Autistic community’s efforts The understanding of the reasoning, autism research to ensure outcomes and to better educate society about autism and emotions and behaviours of Autistic resources reflect their needs and can promote autism acceptance. Healthcare people, and how they experience and provide the greatest impact.28 workers are trusted authorities who can perceive themselves and this world, Health professionals have a responsibility counter stereotypical viewpoints and are all explained through the lens of to consider the effect of their attitudes narratives that reinforce stigma. Motor skills Language Executive function Sensory Perception Severely Autistic/ Mildly Autistic/ Low functioning High functioning Figure 1. An example of a correct (spectrum colour wheel) and incorrect (linear) way to view the autism spectrum 106 Reprinted from AJGP Vol. 50, No. 3, March 2021 © The Royal Australian College of General Practitioners 2021
‘Autistic’ or ‘with autism’? Why the way general practitioners view and talk about autism matters Focus | Viewpoint GPs should use language that reflects Table 1. Ableist terms, language and topics to avoid and use when autism acceptance, focused on building discussing autism23 on an individual’s strengths instead of their deficits and and supporting Terminology to avoid Preferred terminology self-acceptance.29 This is not to dismiss the very real and often challenging factors With autism Autistic that disable Autistic people, such as living Disorder[ed] Difference within a predominantly non-Autistic society that is often not accepting or [Ab]Normal Different/difference/Autistic/non-Autistic accommodating to people who are different. Instead, GPs and broader society Suffer[ing] Experience, impact, effect, challenges need to acknowledge ableism (ie beliefs High/low functioning or mild/severe Describe specific strengths and needs (ie working and practices that discriminate against memory, motor skills, executive function, etc) disabled people) and reflect on how and specific areas where substantial or minimal autism is thought about. It is important support is needed to reconsider the ways in which autism is spoken about to ensure Autistic people are Retarded Disabled, Autistic, neurodiverse/neurodivergent treated with dignity; their experiences, At risk of autism spectrum disorder Increased likelihood/chance of autism preferred language and identity are respected; and a culture of autism Fix/cure[autism]/‘optimal outcome’ Discussions focusing on quality-of-life outcomes acceptance is promoted (Tables 1 and 2). Comorbid Co-occurring Non-verbal Non-speaking/partially verbal Conclusion It is likely that GPs will see Autistic Affected Autistic person patients in their general practices. It is Intervention/some ‘social skills training’ Support, embracing Autistic identity and necessary to be up to date with knowledge prioritising happiness and mental health and language about autism, as society’s understanding of autism is continuingly Treatment Support or services being refined and informed by the Autistic community. It is important to shift away [Autism] symptoms Be specific about Autistic characteristics, features or traits from a linear understanding of autism and move towards a spectrum approach. The Challenging/problematic/disruptive/ [Autistic] meltdown use of functioning labels and classification problem behaviour/tantrum of autism into levels can be harmful and discount the very real challenges Special interest(s) Areas of interest Autistic people experience, negating any Special needs Specific description of needs and disabilities fluidity across the lifespan and even an Table 2. Things to avoid saying to an Autistic person Avoid saying to an Autistic person Explanation You don’t look Autistic/You’re not Autistic Autism is an invisible condition and does not look any particular way. You must be very high/low functioning The autism spectrum is not linear; functioning labels overlook and underestimate people’s individual challenges, disability and strengths. Everyone’s/We’re all a little bit on the spectrum/Autistic Non-Autistic people may share similar traits to Autistic people, but being officially diagnosed as Autistic means fulfilling all the specific criteria for diagnosis of the condition. I know about autism because my [relative/friend] has it All Autistic people experience their autism differently from one another. Knowing someone who is Autistic does not translate to an understanding of autism, or the specific way that person experiences their autism. Never assume, and always listen. © The Royal Australian College of General Practitioners 2021 Reprinted from AJGP Vol. 50, No. 3, March 2021 107
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