What does it mean to be neurodiversity affirmative?

In our clinical practice, we are guided by neurodiversity affirmative principles based on our understanding of the Neurodiversity Paradigm (the underlying philosophy) and Neurodiversity Movement (a human rights, disability and social movement). We acknowledge that the terms neurodiversity and neurodivergent are framed in ways that hold both similarities and differences between different epistemologies (e.g. disability studies, critical autism studies, Neuroqueer theory) and allow space for understandings that differ from our own.

Working in this way is a process of unlearning much of what we have been taught (e.g., in training, workplaces) about Autistic experience. As caring professionals who have most likely chosen our career path to alleviate distress, we can feel uncomfortable reflecting on previous deficit-based practice, which is typically based on knowledge of Autistic experience constructed by the perceived neuromajority, rather than Autistic people (see Fricker, 2007, for discussion of epistemic injustice). Sitting with this discomfort offers the opportunity to develop practice and learn new approaches that seek to move beyond the current epistemic and systemic injustices surrounding the Autistic experience.

In this article, we provide a summary of principles to guide working respectfully with Autistic people within a neurodiversity affirmative framework. Our emphasis is on working with Autistic people as this is our main area of practice, but the underlying principles apply equally to working with any neurodivergent person (we use neurodivergent in its broadest sense, including autism, dyspraxia, dyslexia, ADHD, acquired brain injury, PTSD, depression, Tourette's, OCD etc.).

Reframe the Autistic experience from a disorder to a neurotype

The medical model of disability and all classification systems arising from this model (e.g. the DSM-5-TR and ICD-11) are inherently based on neuronormative assumptions. Being Autistic is a different, valid, neurotype with a distinct developmental trajectory. It is a different way of experiencing the world, not a disorder. 

Stop pathologising Autistic ways of being

Current autism identification (assessment) procedures and tests are based on the pathologisation of Autistic ways of being. For example, being adept at social chit-chat is considered an arbitrary 'gold standard' way to interact, with a dislike of this communication style viewed as a 'deficit'. Within an Autistic culture, however, communicating in-depth on one topic is a much more valued method of communication. Turn-taking still occurs in 'info-dumping' but at a slower pace than the perceived neuromajority considers as the 'right' way to interact. 'We are not asocial, we just socialise differently' (Hammond, 2022, p.102).

Supports should target needs and challenges that autistic people experience, not Autistic ways of being

Post-identification support for Autistic people should never focus on changing or 'treating' the person's neurology but instead on self-advocacy and self-determination. As neuroaffirmative practitioners, we work on the individual's priority areas of support, e.g. adapting both the physical and social environment to better fit their neurotype (through sensory needs, monotropic attention, and communication styles). Autistic ways of being should be validated, a positive Autistic self-identity cultivated, mental health needs attended to, alongside supporting an understanding of specific perception and sensory differences, empowering self-advocacy and supporting those close to the person to appreciate Autistic experience through a neuroaffirmative lens. 

Ensure the Autistic voice is at the centre of everything you do

This does not mean a tokenistic 'listening' to, an implied power dynamic of the perceived neuromajority 'allowing' notional space for the voice of a marginalised group but continuing as before. The Autistic community must have the agency and power to choose for themselves how their experience is explored, understood, identified and supported. As a professional working in this area, this means committing to learning and engaging with the Autistic community's voice, culture, Autistic-led research and publications and community priorities for language, future research and support.

Respect Autistic culture and identity

The idea that an Autistic culture, communication and identity even exists is very new to most people. Some examples of this culture include the symbols that the Autistic community choose to identify with (e.g. the gold infinity symbol) and the ones they firmly reject (e.g. puzzle piece, and the colour blue which have been imposed by those outside the community). Autistic people have distinct ways of being in, exploring and learning about the world. The only way to become and keep up to date with any of these is by listening to Autistic people.

If you have the power, employ autistic and otherwise neurodivergent team members. If you don't have the power, advocate others to do so

It is vital to highlight that Autistic and otherwise neurodivergent people are employers and leaders too, and so this call to action is for all people regardless of their neurology. For example, Thriving Autistic is led by Autistic professionals, as well as employing many other Autistic and otherwise neurodivergent people. The Adult Autism Practice is neurodivergent-led.

Being neurodiversity affirmative does not just mean changing your language to be more respectful of the community, but making systemic changes across workplaces, healthcare systems, communities, and society so that Autistic and otherwise neurodivergent people have the equal rights they deserve. This requires community allies as well as advocates. It is a basic human right to have a voice and a 'place at the table' in equal decision-making about community needs, and diversifying teams in this way also leads to better care and support. 

Recognise that there is immense value in diversity

There is inherent value in diversity in and of itself. We can see the significant negative impact that a reduction of biodiversity causes to ecosystems. As with biodiversity, all humans are part of a tapestry of neurodiversity and we are all connected to each other. We need all kinds of people and minds in order to flourish as worldwide societies. Being neurodiversity affirmative is to see and celebrate the value of this diversity. 

Recognise that there is value in living a disabled life

To see the value in disability and living a disabled life requires examining how our views on disability are inextricably tied to capitalist ideals of being 'productive' and 'independence' (i.e. needing no outside help or support again so that you don't cost the 'system' money).  Both professionals and individuals may need support in examining their relationship with disability and unpacking what external factors impact this. It is an Autistic person's right to choose if they identify as disabled.

All humans have intrinsic value regardless of how much it costs to care for them, or how much money they can make through their 'productivity'. Many disabled (including Autistic and otherwise neurodivergent) people will need ongoing support from others throughout their lives and may never have a paid job, but this does not mean that they do not live a rich, valuable and meaningful life. There are, for example, democratic socialist countries in which the care economy is healthy and well-funded and disabled people are supported to be integral members of their communities without being seen as burdens.

Seeing the value in disability and a disabled life requires ongoing reflection and unpacking of ableism for us all (whether disabled or not). Totton (2015) highlights that so-called 'normalcy' is temporary.

For some, 'misfitting is a rare experience and shocking. For others, it is a central feature of daily lives'; (Totton, 2015, p.40). In other words, we all need to challenge the many assumptions we have collectively gathered over a lifetime of both implicit and explicit messaging transmitted from the people and societal structures around us. To change these external messages and forces, we need first to reflect and change ourselves.

It also includes changing our definition of what 'being productive' means and broadening this from only producing something of monetary or other value to society, to include production of something of value to that individual person, or the production of calm, joy or connection with life.

Disability is not a 'dirty' word (and if you feel it is then this is an indicator that you have some internal unpacking to do in these areas). People should be free to choose to declare themselves disabled, receive the support they need, and not be shamed or be reacted to negatively for doing so either from individuals or societal structures. 

Ensure that all neurodivergent people (including those with Significant Learning Disability and High Support Needs) have power, a place at the table, and are supported and advocated for
 
Being neurodiversity affirmative means that all neurodivergent people, no matter how high their support needs are, or how they communicate, have an equal voice and agency in relation to their own lives and communities. The neurodiversity movement was born out of the wider disability movement and has always (and continues to) encompass, embrace and advocate for the voices of all disabled people.

Traditionally, little effort has been made by researchers or clinicians within healthcare systems to access the voice of Non-Speaking or sometimes Non-Speaking Autistic people, with or without a learning disability. But it is possible to capture these voices. There is a large online community of Non-Speaking or minimally speaking Autistic adults (with and without a learning disability) who interact online on X (formally Twitter), other social media platforms and safe online spaces. They often speak out about what is important to them, how they want to be spoken about, their priorities for research and how they want their care managed. These voices need to be listened to and taken seriously in terms of service planning and support.

Reject compliance-based behaviour approaches, e.g., Applied Behaviour Analysis (ABA)

Behaviour-based compliance approaches are fully rejected by the Autistic community and the neurodiversity paradigm, with comparisons being drawn between them and gay conversion therapy. Despite some recently reported industry changes and a great many kind and well-intentioned practitioners, ultimately the end goal of ABA is an Autistic child and adult who meets neuronormative assumptions such that they are 'indistinguishable' from their neurotypical peers. Compliance-based behavioural methods (including PBS and ABA) have been shown to have significant, negative, long-term effects on people's mental health (Anderson, L 2022; Ram. J 2020; Wilkenfeld & McCarthy 2020).

They are counterintuitive to a human rights model emphasising the vital importance of self-advocacy and self-determination. Besides this, the fact alone that the Autistic community reject them should be enough. If a method is based on compliance through behavioural means, it is not neurodiversity affirmative. As clinicians, we should question the authority of knowledge sources, from whom it was produced and whose epistemic position was privileged. Here, we deliberately include an Autistic written blog recognising all sources of knowledge are valid, 'We all have something to say, but we don't all have the privilege of a platform from which to say it' (Hammond 2022, p.52).

Reject neurotypical social skills training

Neurotypical social skills training is fully rejected by the Autistic community and neurodiversity paradigm, where again comparisons to the practice of gay conversion therapy are made. Like all behaviour-based models, neurotypical social skills training encourages neurodivergent people to hide their true selves (which decades of psychological research have shown us is a core element of positive mental health) and instead promotes masking. It leads to internalised feelings of shame and ableism and the person's core ways of being and interacting are presented as something to hide and change. It ignores Milton's (2012) double empathy: any difficulties in cross-neurotype communication are mutual and are not located in the Autistic person alone. The emphasis should be on both Autistic and neurotypical people developing an understanding of each other's ways of being and working together on the best ways to interact with each other. There needs to be mutual respect for the diversity of communication between humans.

Additionally, there is a large body of research indicating compliance-based behaviour methods are ineffective, increasingly showing links between masking (promoted by neurotypical social skills training) and poor mental health, self-harm and suicide. These approaches place barriers to connection, prevent full exploration of Autistic identity and finding a way to be in the world as an Autistic person, instead encouraging concealment of a crucial element of the self, increasing loneliness and isolation. It leads to feelings of rejection, hurt and devaluation. A similar body of research can be found for the LGBTQIA+ community related to levels of masking of authentic sexuality and gender. 

Advocate for systems and environmental changes

Systematic, cultural and environmental factors are major barriers for the Autistic community in relation to achieving a good quality of life and mental health resulting in Autistic people being misunderstood, misdiagnosed, mischaracterised, rejected and not listened to as a group.

Professionals seeking to make positive changes for Autistic people need to move beyond just assessment (or identification as we call it), 'diagnosis' (again, we avoid this term in The Adult Autism Practice & Thriving Autistic) and individual therapy and also engage in the more wide-reaching work of combating systemic injustices by advocating for change within the systems around their clients. This means (if you are not Autistic yourself) learning to be a true ally and using your privileged position to stand with Autistic people in helping to change these systems.

As professionals (whether we are Autistic, otherwise neurodivergent or neurotypical) we all need to make sure we are upholding the disability rallying cry of 'Nothing About Us Without Us'. Here are a few practical ways you can do this:

• If a conference involves autism in any way, make sure that there is a significant percentage of Autistic people presenting and involved in the aims and goals of the conference.
• If you are neurotypical and asked to present about Autistic people at an event, ensure that you have Autistic colleagues also presenting with you. Or, even better, do you have an Autistic colleague who may know the topic better and do a better job?
• Do not support or recommend an organisation or charity claiming to support Autistic people before checking how many board members are Autistic. None is a huge red flag. Investigate the goals and aims of the organisation and if they align with the Autistic community. What do the Autistic community feel about this organisation and do they align with them? 
• When evaluating research or academic articles, as well as deliberately focusing on reading material from Autistic academics, check to make sure that Autistic people are involved, and their voices heard, from the outset. Are the research goals aligned with community priorities? Were there Autistic people on the steering committee (for example) or did the research use scales and materials designed with Autistic people and validated with Autistic populations?  If it is an article, were Autistic people interviewed and given prominence in the article? If not, this is not a high-quality piece of research in relation to Autistic experience.  
• If you are reading a policy related to Autistic people, were Autistic people involved in developing it? Without this, the document is inherently prejudiced. 
• Embrace any opportunity to share the language preference of the Autistic community in meetings (e.g., remind colleagues to use Autistic, not 'has autism', or ASD)
• Make sure your service is accessible (e.g., a duty worker in a mental health team accessible only by phone does not meet the communication needs of those who cannot make phone calls). 

The more that professionals advocate and look for these factors, the greater and quicker the organisational and societal changes will be for Autistic people. 

Support fostering a positive Autistic identity as a priority goal

Fostering a positive Autistic identity should be the number one goal for all professionals working in this area. Support the people coming to you to have pride in their culture, value their own personal communication style and recognise and increase their own personal strengths. Help them to promote their own self-autonomy and self-advocacy. Perhaps most important of all, link them in with Autistic peers and the community. Help them to understand what it means to be neurodiversity affirmative and the social model of disability and in identifying for themselves what the components of a good and valuable life are, and how they can advocate for these things. Support them in understanding the importance of environmental fit to their overall wellbeing. 

A process of ever-becoming

Moving towards neuroaffirmative practice is a process of ever-becoming: you will never arrive. Seek to always learn from the Autistic community, ever exploring your own knowledge. Do not make neuronormative or heteronormative assumptions in your clinical work. Strive for cultural humility. (Kandeh et al., 2020). Show yourself compassion as you unlearn, re-learn, and ever move forward. Learning is an ever-looping process of becoming, it is not linear. Welcome this.

Contributors

Davida Hartman is a Child and Educational Psychologist, Adjunct Professor at the UCD School of Psychology, and is late identified ADHD. She is Clinical Director and Principal Psychologist at The Children's Clinic, Ireland (specialising in neurodiversity affirmative assessment and supports for children) and Clinical Director at The Adult Autism Practice (specialising in online neurodiversity affirmative adult autism assessments). 

Dr Anna Day is Co-Principal Clinical Psychologist at The Adult Autism Practice, and is Autistic, self-identifying as ADHD. Anna is passionate about advocating for Autistic rights in education and mental health, and has a particular interest in neuroqueering. Anna has an Autistic young person.

Tara O'Donnell-Killen is the founder and CEO of Thriving Autistic (specialising in supporting Autistic adults) & The Neurodivergent Practitioner Community (a platform for neurodivergent mental health practitioners to advertise services) and the Post Identification Support Lead at The Adult Autism Practice. Tara is an Autistic Coaching Psychologist who brings a unique perspective as both an Autistic professional and parent with a deep interest in human rights and the Neuro-Affirmative approach.

Jessica K Doyle is an Assistant Psychologist and a neurodiversity and sensory Consultant. Her research has focused on mechanisms of Autistic perception, Autistic experience and Universal sensory design. Jessica K is Autistic and AdHd, she is passionate about repositioning the lens away from thwarting Neurodivergent authenticity to designing for diversity and fostering growth. ORCID ID: 0000-0002-9258-3981

Maeve Kavanagh is a Principal Clinical Psychologist working in The Adult Autism Practice and Co-Director of Childversity. Maeve has worked with Autistic adults and children in public and private services for over 15 years and strives to be an ally to the Autistic community.

Juliana Azevedo is a Senior Clinical Psychologist who has extensive experience working in lifespan public services. She also works with The Adult Autism Practice since 2020.

Image: Untitled by Natalie Dance (29/11/2022 - acrylic, felt pen, paper - 43cm x 61cm)

Key sources

Anderson, L.K. (2022). Autistic Experiences of Applied Behaviour Analysis. Autism: The International Journal of Research and Practice, August, 13623613221118216. 
Fricker, M. (2007). Epistemic Injustice: Power and the Ethics of Knowing. New York: Oxford University Press.
Gray-Hammond, D.G. (2022). The New Normal: Autistic musings on the threat of a broken society. Amazon.
Kandeh, M.S., Kandeh, M.K., Martin, N. & Krupa, J. (2020). Autism in Black, Asian and Ethnic Minority Ethnic Communities: A Report on the First Autistic Voice UK Symposium, Advances in Autism 39 (February): 88. 
Totton, N. (2023). Different Bodies: Deconstructing normality. Monmouth: PCCS Books.
Ram, J. (2020) I am a disillusionsed BCBA: Autistics are right about ABA. Neuroclastic 18 September 2023 https://neuroclastic.com/i-am-a-disillusioned-bcba-Autistics-are-right-about-aba/
Wilkenfeld, D. A., & McCarthy, A.M. (2020). Ethical Concerns with Applied Behaviour Analysis for Autism Spectrum Disorder. Kennedy Instutute of Ethics Journal 30 (1): 36-69.