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 105Focus | 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 107Focus | Viewpoint ‘Autistic’ or ‘with autism’? Why the way general practitioners view and talk about autism matters
individual’s day-to-day capacity. Lastly, as References you’: Healthcare experiences of adults on the
1. Stein Duker LI, Sadie Kim HK, Pomponio A, autism spectrum. Autism 2015;19(7):824–31.
a profession, it is critical to change the way doi: 10.1177/1362361315576221.
Mosqueda L, Pfeiffer B. Examining primary
autism is talked about, shifting towards care health encounters for adults with 17. Singer J. ‘Why can’t you be normal for once in
identify-first and respectful language that autism spectrum disorder. Am J Occup Ther your life?’ From a ‘problem with no name’ to the
2019;73(5):7305185030p1-p11. doi: 10.5014/ emergence of a new category of difference. In:
does not see autism as a burden or disease ajot.2019.037226. Corker M, French S, editors. Disability discourse.
to cure but an accepted and valued part of 2. Unigwe S, Buckley C, Crane L, Kenny L, Buckingham, UK: Open University Press, 1999; p.
Remington A, Pellicano E. GPs’ confidence 59–70.
our species’ neurodiversity.
in caring for their patients on the autism 18. Oliver M. Introduction: Setting the scene. In:
spectrum: An online self-report study. Br J Gen Social work with disabled people. Heidelberg, DE:
Pract 2017;67(659):e445–e52. doi: 10.3399/ Springer Nature, 1983; p. 1–5.
bjgp17x690449.
Key points 19. Nicolaidis C. What can physicians learn
3. Zerbo O, Massolo ML, Qian Y, Croen LA. A study from the neurodiversity movement? Virtual
• Stereotypes, stigma, myths and of physician knowledge and experience with Mentor 2012;14(6):503–10. doi: 10.1001/
misinformation about autism autism in adults in a large integrated healthcare virtualmentor.2012.14.6.oped1-1206.
system. J Autism Dev Disord 2015;45(12):4002–14. 20. Fenton A, Krahn T. Autism, neurodiversity, and
persist, resulting in poor healthcare doi: 10.1007/s10803-015-2579-2. equality beyond the ‘normal.’ J Ethics Ment Health
experiences. 4. Baio J, Wiggins L, Christensen DL, et al. Prevalence 2007;2(2):1–6.
• Functioning labels are harmful and do of autism spectrum disorder among children aged
8 years – Autism and developmental disabilities
21. den Houting J. Neurodiversity: An insider’s
perspective. Autism 2019;23(2):271–73.
not capture the full and fluid nature monitoring network, 11 sites, United States, doi: 10.1177/1362361318820762.
of autism. 2014. MMWR Surveill Summ 2018;67(6):1–23.
22. Alvares GA, Bebbington K, Cleary D, et al.
doi: 10.15585/mmwr.ss6706a1.
• Language preferences of Autistic 5. Nicolaidis C, Schnider G, Lee J, et al. Development
The misnomer of ‘high functioning autism’:
Intelligence is an imprecise predictor of functional
patients and the Autistic community and psychometric testing of the AASPIRE abilities at diagnosis. Autism 2020;24(1):221–32.
should be used when referring adult autism healthcare provider self-efficacy doi: 10.1177/1362361319852831.
scale. Autism 2020;1362361320949734.
to autism. 23. Bottema-Beutel K, Kapp SK, Lester JN, Sasson NJ,
doi: 10.1177/1362361320949734.
Hand BN. Avoiding ableist language: Suggestions
• It is important to avoid using ableist, 6. Roberts EM, English PB, Grether JK, for autism researchers. Autism Adulthood 2020.
Windham GC, Somberg L, Wolff C. Maternal
deficits-based and pathologising residence near agricultural pesticide applications
doi: 10.1089/aut.2020.0014. [ePub ahead of print]
language in relation to autism. 24. American Psychiatric Association. Diagnostic and
and autism spectrum disorders among children
statistical manual of mental disorders (DSM-5).
in the California central valley. Environ Health
5th edn. Arlington, VA: APA, 2013.
Perspect 2007;115(10):1482–89. doi: 10.1289/
Authors ehp.10168. 25. World Health Organization. International statistical
classification of diseases and related health
Pia Bradshaw BIS (Hons), MA, Queensland Centre 7. Hviid A, Stellfeld M, Wohlfahrt J, Melbye M.
problems. 10th revision. Geneva, CH: WHO, 2019.
for Intellectual and Developmental Disability Association between thimerosal-containing
Available at https://icd.who.int/browse10/2019/en
(QCIDD), Mater Research Institute, The University of vaccine and autism. JAMA 2003;290(13):1763–66.
[Accessed 20 January 2021].
Queensland, and The Cooperative Research Centre doi: 10.1001/jama.290.13.1763.
for Living with Autism (Autism CRC), Qld 26. Kenny L, Hattersley C, Molins B, Buckley C,
8. Waldman M, Nicholson S, Adilov N. Does television
Povey C, Pellicano E. Which terms should be used
Claire Pickett MBBS, DipRACOG, Certificate of cause autism? Working Paper 12632. Cambridge,
to describe autism? Perspectives from the UK
Sexual and Reproductive Health, General Practitioner, MA: NBER Working Paper Series, 2006.
autism community. Autism 2016;20(4):442–62.
Ballarat Community Health Lucas Facility, Vic 9. Bargiela S, Steward R, Mandy W. The doi: 10.1177/1362361315588200.
Mieke L van Driel MD, MSc, PhD, FRACGP, General experiences of late-diagnosed women with
27. The Art of Autism. 105 favorite quotes
Practitioner and Emeritus Professor, Mayne Academy autism spectrum conditions: An investigation
about autism and aspergers. Fallbrook, CA:
of General Practice and Primary Care Clinical Unit, of the female autism phenotype. J Autism
The Art of Autism, 2020. Available at https://
Faculty of Medicine, The University of Queensland, Qld Dev Disord 2016;46(10):3281–94. doi: 10.1007/
the-art-of-autism.com/favorite-quotes-about-
s10803-016-2872-8.
Katie Brooker PhD, BHlthSc (Hons), Postdoctoral autism-and-aspergers [Accessed 20 January
Research Fellow, Queensland Centre for Intellectual 10. Lewis LF. Identifying autism spectrum disorder in 2021].
and Developmental Disability (QCIDD), Mater undiagnosed adults. Nurse Pract 2018;43(9):14–18.
28. Pellicano E, Dinsmore A, Charman T. What should
Research Institute, The University of Queensland, doi: 10.1097/01.NPR.0000544285.02331.2c.
autism research focus upon? Community views
and The Cooperative Research Centre for Living with 11. Wing L. Sex ratios in early childhood autism and and priorities from the United Kingdom. Autism
Autism (Autism CRC), Qld related conditions. Psychiatry Res 1981;5(2):129–37. 2014;18(7):756–70. doi: 10.1177/1362361314529627.
Anna Urbanowicz PhD, BSc (Hons), Postdoctoral doi: 10.1016/0165-1781(81)90043-3.
29. Identity-First autistic. Make the change. Blackpool,
Fellow, Social and Global Studies Centre, School of 12. Hull L, Petrides KV, Allison C, et al. ‘Putting on Lancs: Identity-First autistic, 2016. Available at
Global, Urban and Social Studies, RMIT University; my best normal’: Social camouflaging in adults www.identityfirstautistic.org/make-the-change
Honorary Fellow, Queensland Centre for Intellectual with autism spectrum conditions. J Autism Dev [Accessed 20 January 2021].
and Developmental Disability (QCIDD), Mater Disord 2017;47(8):2519–34. doi: 10.1007/s10803-
Research Institute, The University of Queensland, Qld 017-3166-5.
Competing interests: PB is Autistic and attention 13. Hull L, Petrides KV, Mandy W. The female
deficit hyperactivity disorder (ADHD) and an autism autism phenotype and camouflaging: A narrative
health researcher and PhD student in Medical review. Rev J Autism Dev Disord 2020;7:306–17.
Sciences, and CP is an Autistic GP. doi: 10.1007/s40489-020-00197-9.
Funding: PB and KB are funded by the Cooperative 14. Bulluss E, Sesterka A. Authenticity and autism:
Research Centre for Living with Autism (Autism When being true to oneself means revealing
CRC), established and supported under the differences. Psychology Today. 27 Jan 2020.
Australian Government’s Cooperative Research Available at www.psychologytoday.com/au/blog/
Centres Program. AU is funded by RMIT Vice- insights-about-autism/202001/authenticity-and-
Chancellor’s Postdoctoral Research Fellowship autism [Accessed 20 January 2021].
(Fulbright Scholar).
15. Schuler AL, Prizant BM. Echolalia. In: Schopler E,
Provenance and peer review: Commissioned, Mesibov GB, editors. Communication problems in
externally peer reviewed. autism. Boston, MA: Springer, 1985; p. 163–84.
Correspondence to: 16. Nicolaidis C, Raymaker DM, Ashknazy E, et al.
pia.bradshaw@uq.edu.au ‘Respect the way I need to communicate with correspondence ajgp@racgp.org.au
108 Reprinted from AJGP Vol. 50, No. 3, March 2021 © The Royal Australian College of General Practitioners 2021You can also read
