Over the past few months, the impact of language and what we call people with mental health conditions has been highlighted to me in a lot of different places. For example, in the newest academic papers, my lectures and even now we talk about people with conditions in clinical psychology. And in this brilliant podcast episode, we look at what impact does language have on people with mental health conditions, and most importantly, what is the best term to use to describe this group of people. If you enjoy autism, clinical psychology and more, then you will love today’s episode.
This episode has been sponsored by Developmental Psychology: A Guide To Developmental And Child Psychology. Available from all major eBook retailers and you can order the paperback and hardback copies from Amazon, your local bookstore and local library, if you request it.
Introduction To “Person With Autism” or “Autistic Person”
As a result of me fully believing in honesty between me and you, as my wonderful podcast audience, I first encountered this when I was working with a PhD student on my Gamification of Autism literature review back in May. I just thought that he was being a bit nit-picky because he wasn’t sure on what term to use because this language is very new, but I am seeing it more and more so that’s why I want to focus on it now. Therefore, I just thought this being a little too correct because from my point of view, labels, diagnosis and more, all of them can be damaging and stigmatising and harmful in their own right, and I have written about these impacts in different places.
However, when I returned to university this September and we started having autism lectures, I realised the drive towards correct language is very real, good and it needs to happen.
But again, no one is taking the time to explain the language to me as a student, so I found some research and now I want to help explain this to all of us.
Let’s crack on with it then.
Also, I should mention here that there is a fair amount of today’s episode focuses on the carer’s experience of using language. But at the end of the podcast episode, I do explain how this applies to us as current or future clinical psychologists.
Person-First and Condition-First Language
I seriously doubt this will come as a surprise to anyone but the vast majority of people’s understanding of autism comes from the biomedical model standpoint. This model sees autism as a disease and it normally uses person-first language. For example, “Person With Autism” (Kenny et al., 2016).
In addition, I am very happy to know that despite the damage some labels can do to people with mental health conditions, there are a lot of parents of young people on the autistic spectrum that find the diagnosis process reassuring. Since it validates their concerns about their child’s well-being, behaviour and future, as well as it offers a roadmap of support. But it gets rather interesting when we realise that other parents and children find the process of integrating the concept of Autism Spectrum Conditions (ASC) into their narrative about their child’s very identity to be very confronting.
As a result of lots of carers and parents go through a process of redefining their expectations towards their child, and some even grieve for the former expectations they have about parenting a neurotypical child.
Personally, I just want to jump in here and mention that I do understand this wholeheartedly, because if you’re a parent or you have nieces and nephews then you do plan for the future. Like I should have a niece coming next May and of course, me and my family are already planning for things for the future and far future, so if those ideas are effectively ripped away and made “impossible” then this can be very upsetting.
However, I also want to point out here that just because a child as ASC, it doesn’t mean they can’t do anything in life. Since given the right support and scaffolding, autistic children can do a lot that neurotypical children can.
Anyway, if case you didn’t know, in the UK at least, ASC diagnosis takes years and of course, the person with autism continues to show their autistic behaviour. Therefore, by the time the carers and parents receive a diagnosis, the vast majority of these are absolutely no stranger to being judged by others (Rowan, 2013) and they experience increased levels of stress (Bonis, 2016). This happens because their child’s special needs and these tend to have a commodity with conditions. For instance, anxiety, attention challenges, sleep difficulties and disruptive disorders (Mutler et al., 2022) and this all has financial implications too (Tathgur and Kang, 2021).
Why Do Carers and Parents Choose A Language Preference?
Moving onto the main topic of this episode, even before a parent or carer has received an ASC diagnosis for their child, they might choose a language preference to help set a boundary surrounding the identity narrative they want to create for their loved one. This serves a few purposes, including it helps to gently assimilate the new reality of the diagnosis into the perception of their loved one.
Moreover, the heterogeneous nature of ASC adds to a carer’s uncertainty about the impact of early autism interventions on their child’s symptomatology. As well as it’s important to note here that every single child on the autistic spectrum is different with the frequency and severity of their symptoms changing over time. This all makes it a lot more difficult for carers to experience acceptance.
Why Do People Choose Person-First Language Initially?
With diagnosis mainly being from the biomedical model, it leaves parents and carers wanting to use Person-First language initially for a few reasons. For example, if the carer comes from a counselling or mental health vocation then person-first language could come from their own personal preference. Also, person-first language is effective for their limited awareness of the experiences of autistic people from their own point of view. As well as lots of carers are uncertain about how the diagnosis will affect their child’s sense of self and being in the world.
Furthermore, once a carer has a diagnosis, they slowly or quickly start expanding their awareness of what ASC means over the course of years. Because we need to appreciate as current or future psychologists that this is a very scary time because these carers do not know what ASC is, what it means and what help is available. That’s why part of our job in an ideal world is to help guide them through the process.
As a result, the carer’s knowledge expands over the course of years and they have a clearer understanding of what being on the autistic spectrum actually means for their child, and this includes how the child sees themselves. For instance, lots of carers notice how they learn to appreciate the cherished aspects of their personality and this includes the aspects that are intertwined with them on the spectrum. It also includes the acknowledgement of the challenges the person faces but also the celebration of their growth and their achievements.
Subsequently, as a carer’s experience of acceptance deepens, sometimes their language preference shifts so they prefer disability-first terminology.
Nonetheless, I know I am focusing a lot on the carer’s viewpoint here, and normally I would flat out avoid this because personally I am only really interested in what the person with the condition is experiencing. But in this case, there are a lot of narratives and evidence of this coming from the carers of children with ASC.
Consequently, I am absolutely not saying children with the condition do not have the right to choose their own language preference or what they want to be called. Because they seriously do have that right and everyone else does too. I am simply writing about this from what the research and other articles I can find says.
Why Might Diagnosis-First Language Be Better?
It turns out that whilst diagnosis-first language isn’t too common in certain fields, like counselling, it has been suggested by Brown (2012) to be associated with greater acceptance of autistic people as neurodiverse and this helps to go beyond the disorder model perspective on autism.
Furthermore, Kenny et al. (2016) found that despite some variability, a lot of parents and carers of ASC children generally prefer diagnosis-first terminology, as it places an emphasis on the value-neutral neurodiversity and positive aspects of autism.
Overall, modern research suggests that identifying as autistic does have a positive impact on the self-esteem of autistic people and lowers their risk of developing depression (cage et al., 2017)
What Does This Mean For Clinical Psychologists?
As current or future psychologists, I definitely feel like there are quite a few different takeaways for us to learn from. For example, I will always firmly believe that is it critical that we move away from the disorder-perspective model of all conditions because that isn’t how mental health conditions work and it is so biomedical model that I seriously doubt has any place in modern clinical psychology. Therefore, using diagnosis-first language is important. Not only for us as professionals because it shows how serious we are about moving away from the biomedical model and towards something more empirical and something akin to the biopsychosocial model.
However, it is also important for us to start using diagnosis-first language because it addresses something that is so wonderfully critical to our profession. It helps to decrease depression, psychological distress and it helps to improve self-esteem. Since being on the spectrum does not make a person messed up, strange or weird, and if using Diagnosis-first language helps our clients and the people we are meant to be help.
Then this is only a good thing.
Personally, and as the final thing for this section, I will mention that I was very surprised by today’s podcast episode. Since I fully believed coming into the topic that person-first language was the best because it should be harmful to define someone only by their condition, but it turns out that whilst that is true in other areas, when it comes to person-first or diagnosis-first language, it is better to do diagnosis-first. And that is why I love this podcast, learning and psychology, because there is always something to surprise you.
Conclusion:
At the end of this great episode, I think the most important thing we need to remember here is that diagnosis-first language isn’t bad, and in fact, it can have a lot of great benefits for a person’s mental health and acceptance. So personally, I really hope that we continue to debate the impact of language, we keep researching it and hopefully, over time more and more people will start to adopt this more positive language, and in an ideal world our society’s definition of autism will change too, to become more positive and accepting.
Being autistic isn’t a death sentence, a prison sentence or anything. And just because you’re autistic, it doesn’t mean you cannot do things to a large extent. It just means you think differently, you might need more support but I always come back to one of the founding principles of the Mental Capacity Act. We should never ever assume someone cannot do something just because of their condition.
And that seriously applies to autism.
I really hope you enjoyed today’s clinical psychology podcast episode.
If you want to learn more, please check out:
Developmental Psychology: A Guide To Developmental And Child Psychology. Available from all major eBook retailers and you can order the paperback and hardback copies from Amazon, your local bookstore and local library, if you request it.
Have a great day.
Clinical Psychology References
APA (2013) Diagnostic and Statistical Manual of Mental Disorders. 5th ed. Washington, DC: APA
Bonis S. Stress and Parents of Children with Autism: A Review of Literature. Issues Ment Health Nurs. 2016;37(3):153-63. doi: 10.3109/01612840.2015.1116030. PMID: 27028741.
Brown, Lydia (2 March 2012). "Identity First Language". Autistic Self Advocacy Network.
Cage, E., Di Monaco, J. and Newell, V., 2017. Experiences of Autism Acceptance and Mental Health in Autistic Adults. Journal of Autism and Developmental Disorders, 48(2), pp.473-484.
Crompton, C. J., Hallett, S., Ropar, D., Flynn, E., & Fletcher-watson, S. (2020). ‘I never realised everybody felt as happy as I do when I am around autistic people’: A thematic analysis of autistic adults’ relationships with autistic and neurotypical friends and family. Autism, 136236132090897. https://doi.org/10.1177/1362361320908976
Siegel, D., 2012. Pocket Guide to Interpersonal Neurobiology: An Integrative Handbook of the Mind. New York: W. W. Norton & Company.
Hayes SA, Watson SL. The impact of parenting stress: a meta-analysis of studies comparing the experience of parenting stress in parents of children with and without autism spectrum disorder. J Autism Dev Disord. 2013 Mar;43(3):629-42. doi: 10.1007/s10803-012-1604-y. PMID: 22790429.
Kenny L, Hattersley C, Molins B, Buckley C, Povey C, Pellicano E. Which terms should be used to describe autism? Perspectives from the UK autism community. Autism. 2016 May;20(4):442-62. doi: 10.1177/1362361315588200. Epub 2015 Jul 1. PMID: 26134030.
livescience.com. 2022. Parents Rank 'Judgment' as a Big Problem in Raising a Child with Autism. [online] Available at: <https://www.livescience.com/36555-parents-judgment-problem-autism-behav…; [Accessed 15 July 2022].
Mutluer T, Aslan Genç H, Özcan Morey A, Yapici Eser H, Ertinmaz B, Can M, Munir K. Population-Based Psychiatric Comorbidity in Children and Adolescents With Autism Spectrum Disorder: A Meta-Analysis. Front Psychiatry. 2022 May 23;13:856208. doi: 10.3389/fpsyt.2022.856208. PMID: 35693977; PMCID: PMC9186340.
https://www.psychologytoday.com/gb/blog/nurturing-self-esteem-in-autistic-children/202207/autistic-person-or-person-autism
Tathgur MK, Kang HK. Challenges of the Caregivers in Managing a Child with Autism Spectrum Disorder— A Qualitative Analysis. Indian Journal of Psychological Medicine. 2021;43(5):416-421. doi:10.1177/02537176211000769
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